Leave Your Ego At the Door & Join/Share at "The Lupus Channel"!

Information is Power!  
My goal at "The Lupus Channel" Google community is to share all things Autoimmune-
Articles, Info, Blogs, Events, Videos & Vlogs, Webinars, Pinterest Boards, Support Groups, Research & Studies, etc on: Lupus Fibromyalgia Sjogrens Scleroderma MCTD (mixed connective tissue disease  & other autoimmune conditions
AND to help you connect to other people just like YOU & Me who learn from each other everyday by sharing experiences on how to most effectively manage our disease and have quality of life!  Nice to meet you & WELCOME!  JJ
A Special Note to Advocates:  Feel FREE to share your links to your groups, your posts & your contact on "The Lupus Channel"-I left my ego at the door- the objective is simply to reach the patients who need help!  TY so much!  I look forward to your posts!
Click HERE to JOIN "The Lupus Channel: Google Community-

---

My goal is to share all things Autoimmune-Articles, Info, Blogs, Events, Videos & Vlogs, Webinars, Pinterest Boards, Support Groups, Research & Studies, etc on:

• Lupus
• Fibromyalgia
• Sjogrens
• Scleroderma
• MCTD (mixed connective tissue disease
•  & other autoimmune conditions

And to help you connect to other people just like YOU & Me who learn from each other everyday by sharing experiences on how to most effectively manage our disease and have quality of life!
Nice to meet you!  JJ
ps. I make lupus music videos to help spread awareness so that we can get closer everyday to a cure!  Here are my videos- HERE!
Hook up with The Lupus Channel on Twitter HERE!  And subscribe to my Blog HERE!
Also Please Join The Lupus Channel FB Group HERE!
My Personal Accounts
You can "Friend" me on FB- HERE!  And you can "Follow" me on Twitter- HERE!
Also-feel free to email me anytime HERE!
Your not alone with lupus or any autoimmune disease-there is tons of help out here!  Reach out TODAY!

The Inflammation connected to the Hamstring..The Hamstring connected to the Tendon..& that’s the way of the Lupus!

hamstring tendonitis from lupus-inflammation

So-there it is.  Tendonitis in the hamstring.  NO, I did not fall even though YES, I am a klutz.  And NO, I did not get punched! (except by lupus)

I woke up a couple days ago and Surprise- OWWWWWWWWWWWWWWWWWWWWWWWWW!  It's hot, swollen and yes, painful.  It's a pulling type of pain, from around my calfs up to my lower thighs and back of my leg.  My doc is scheduling a cortisone shot which will deflate the inflammation and the pain asap.  I'm also taking steroids and anti-inflammatories.  It helps.  Alot.  Ice is indicated for inflammation as well.
I tried to get a selfie of this but ended up tangled and unbalanced like you get playing Twister!  Finally got hubbie to snap a photo-it even shocks ME & it's on my body!
So for those who question what kind of inflammation mixed connective tissue disease causes- tendonitis is just one of em!  Lupus is a mixed connective tissue disease-and our bodies are made of this material-so it's all up for lupus damage grabs, lol.  Two days of bedrest and a few shots isn't so bad-

"Housebound is no worse than earthbound it's what you make of it."

---

Here's some more info on hamstring tendonitis & lupus connective tissue damage from Medicine Net:

Connective tissue diseases are actually a group of medical diseases. A connective tissue disease is any disease that has the connective tissues of the body as a primary target of pathology. The connective tissues are the structural portions of our body that essentially hold the cells of the body together. These tissues form a framework, or matrix, for the body. The connective tissues are composed of two major structural protein molecules, collagen and elastin. There are many different types of collagen protein that vary in amount in each of the body's tissues. Elastin has the capability of stretching and returning to its original length -- like a spring or rubber band. Elastin is the major component of ligaments (tissues that attach bone to bone) and skin. In patients with connective tissue diseases, it is common for collagen and elastin to become injured by inflammation.
Many connective tissue diseases feature abnormal immune system activity with inflammation in tissues as a result of an immune system that is directed against one's own body tissues (autoimmunity).

Diseases in which inflammation or weakness of collagen tends to occur are also referred to as collagen diseases. Collagen vascular disease is a somewhat antiquated term used to describe diseases of the connective tissues that typically include diseases that can be (but are not necessarily) associated with blood vessel abnormalities.

Brain Fog

Feels like life is moving but I'm standing still..my brain just musing passively...parusing nothing.

Not a good time to make decisions although I can still laugh at jokes
which are all I want to hear.  The rest is mumbojumbo.

Someone else make the coffee, fix the dinner, make the drinks.  I can only do what you put in front of me.  Even then don't expect my best.

My get up and go has got up and went
And left what you see here.  A shell.  Inside is squishy jelly.  No brain cells here.

Just an ameba.  The most basic form of life.  My shell.  My armor. 
Guarding nothing.  Nothing but squishy jelly.  What a joke.

I'm not laughing, though I'd like to be.  Not smiling, though I'd like to be.  Not feeling, though I'd like to be.  Empty.  So empty.

Such is brain fog.  I didn't lose my keys.  I didn't forget to feed the dog and cat.  I don't know what I forgot...such is real confusion.  To have to put my day plan into others to take the first move.  My moves are secondary.  Time to jump up?  Just say so.  I can do that much.

There's a big open space like a field in my mind
And I'm on it grazing.  Nothing else.  The heat of the sun hits my back and feels good while it brightens up my skin.  The blue sky goes on forever.
I'm but a speck in a vast wilderness of green prairies and flatlands
The picture perfect clouds roll slowly by my emptiness
They all look the same.  Where is my voice?  My constitution? 
Why is my spirit so lost?

I'll have to ask the fog itself.  Release me and give me back my thoughts, I say.
They're mine and only for me.  What good are they to you?  Only I can turn them into meaningful words and actions.

Such is brain fog.

The windows in my apartment are covered not once but twice with blackout drapes.  No sun, yet the artificial light luminates the room enough for me to be fooled into thinking it's daytime.  What else is fooling me besides the light?

The tv chatters, the phone rings, the alarm goes off, the printer hums and the dog barks.  Even the keyboard clicks as the words hit the page, yet my mind is quiet.  Someone else attends to it.  All I can do is watch.

I'll jump when you tell me.  Put the words in front of me so I can reach them and I'll press the keys.  Free my entrapment, break the armor, expose the jelly and the joke.  I can face them.  At least I have that function.  That is true spirit.  That is my lifeblood.  That is what is left when the rest gets foggy.   My essence is safe. 

The fog is only a cloak hiding behind my double black out drapes.  It is I who fool the fog with my artificial  light.  I decide to make it daytime and my fingers press the keys with their orders from the very brain that thought it was incapable just a moment ago. 

The clouds now take shapes along the skyline and the blueness of the afternoon sky overwhelms my senses. 

Such is brain fog lifted.

Ode to Decompression Surgery

There once was a girl with a whole lot of curl

and feet that just weren't right   

so one day she did scream

to her docs it would seem   

she really just wanted a fight.    

Then one kind ole doc  

looked at his clock  

and said we'll set up a room where we'll serve                

and we'll cut out your bad nerve...   

and take your pain all away.     

In other words my nerve entrapment in my right foot hasn't stopped for FOUR agonizing days and is sucking the life out of me so my neuro and pain doc r trying to get me admitted for surgery.      ........and thats that!                          

Crumbling and Grumbling (my teeth, that is! lol)

Hi guys!  I'm doing good, coming out of the lupus funk I've been in (tired and cranky, lol) but my back teeth on the top are crumbling.  Falling apart and falling out.  I had a gap back there where my filling fell out (was there about 30 yrs or more I guess) and it was getting worse and worse over the last 6 months but now the  tooth next to it is chipping (crumbling) away.  I've never had much trouble with my teeth till now so I'm a little nervous.  At least it's in the back.

Anyone else have problems with their teeth?  Is it from lupus?  I know gums are connective tissue, but I also know not everything is because of lupus (unless it's my fault of course and then I can freely blame lupus, hahahaha)  I know many lupies have problems with teeth and their gums from Sjogren's and dry mouth.  I'll keep posting as I go, time to go see a dentist, YUK!  

Here's some info I found about teeth:

The accumulation of dental plaque and tartar is usually what causes gingivitis, and it's almost always the result of inadequate brushing and flossing.
If poor oral hygiene promotes the overgrowth of bacterial plaque, changes in the composition of the plaque occur. The bacterial balance shifts over to gram negative anaerobic bacteria, which are responsible for inflammatory diseases.

The bacteria also invade the crevices between the gum and tooth (sulcus) and infect the periodontal tissues. These bacteria that form dental plaque and tartar release toxins that stimulate the body's immune system to over produce powerful infection-fighting factors called cytokines.

The immune factors of the body, in their effort to fight the infection, attack the person's own infected cells and periodontal tissues. This way, the supporting tissues of the teeth - gums, connective tissue and alveolar bone - are destroyed.

25% of lupus patients develop Sjogrens Syndrome which is characterized by autoimmune attack on the tear producing lacrimal glands in the eye and the saliva producing glands in the mouth which results in a sensation of dry eyes, sometimes accompanied by a feeling of sand, grit or gravel in the eyes, and dry mouth. The reduction in saliva production is unhealthy and can promote dental decay as saliva has the function normally of cleaning teeth and also provides antibodies which can protect from bacterial damage to teeth and gums. Persons with this condition need excellent dental hygiene, should avoid smoking, receive frequent dental cleaning and checkups and can use sugar free lozenges to promote residual saliva production. There are two prescription medications that can be used, salagen/pilocarpine and evoxax that promote saliva formation.

Lupus and related conditions can cause the gums to recede, making them more vulnerable to infection and potentially exposing the lower parts of teeth which aren"t covered by thick protective enamel. For this reason, lupus patients should take extra care of their gums and, if possible, use an antibacterial mouthwash twice a day. A dentist may be able to cover exposed areas of lower tooth with artificial enamel. A patient in this situation should also avoid sugary fizzy drinks and acidic fruit or drinks which are especially damaging to vulnerable areas of the tooth.

Mini Strokes Not So MINI!

Mini Strokes Are Not Mini!

If you have a systemic disease like lupus, you’ve heard the word TIA before.  Did you Ever Worry if You Might Have Had a small stroke, also called a tia, transient ischemic attack ?

 TIA occurs when blood flow to a specific part of the brain is temporarily decreased. Even though a TIA occurs in the unseen reaches of the brain, TIA symptoms can be easy to spot. As a general rule, all the symptoms appear suddenly, and often there is more than one TIA symptom present at the same time. Therefore, a TIA can usually be distinguished from other causes of dizziness or headache.  A TIA is serious.  A TIA is a RED FLAG that can save your life!   It is a warning of an impeding stroke.  It is not to be taken lightly.  You may be having a stroke and have only a small window of time to get to the hospital and be treated.  It is not a condition in itself, it is a symptom and sign that you are going to have a stroke.

Is there anyway to tell if you have had a TIA after the symptoms subside?

Yes and No.  Almost always, the symptoms and signs of a TIA will have gone away by the time you get to the hospital. A TIA diagnosis may be made based on your medical history alone.  There are tests that can be done to determine why and if you had a tia episode or stroke.  EARLY INTERVENTION of a TIA OR STROKE in a hospital CAN and DOES SAVE LIVES!  Call 911 without delay!!!!

Exams and Tests

The health care provider will do a complete physical exam to check for heart and blood vessel problems, as well as for problems with nerves and muscles.

Your blood pressure may be high. The doctor will use a stethoscope to listen to your heart and arteries. An abnormal sound called a bruit may be heard when listening to the carotid artery in the neck or other artery. A bruit is caused by irregular blood flow.

Tests will be done to rule out a stroke or other disorders that may cause the symptoms.

•             You will almost always have a head CT scan or brain MRI. A stroke will show changes on these tests, but TIAs will not.

•             You will have an angiogram, CT angiogram, or MR angiogram to see which blood vessel is blocked or bleeding.

•             You may have an echocardiogram if your doctor thinks you may have a blood clot from the heart.

•             Carotid duplex (ultrasound) can show if the carotid arteries in your neck have narrowed.

•             You may have EKG and heart rhythm monitoring tests to check for irregular heartbeat.

Your doctor may do other tests to check high blood pressure, heart disease, diabetes, high cholesterol, and other causes of and risk factors for TIAs or stroke.  Your doctor may use these tests to check for hypertension, heart disease, diabetes, high blood lipids, vasculitis, and peripheral vascular disease.

Other Tests to diagnose a TIA may include:
* CBC and PT tests to rule out a blood disorder
* Head CT scan or cranial MRI
* Carotid duplex (ultrasound)
* Echocardiogram
* Cerebral arteriogram
Additional tests and procedures may include:
* Blood glucose
* Blood chemistry
* Serum lipids
* ESR (Sedimentation rate)
* Tests for syphilis
* ECG
* Chest x-ray

Specific TIA Symptoms

For a person having a TIA, the symptoms will vary depending on which part of the brain is affected.

 Examples of specific symptoms include:

•             Sudden numbness or weakness of face, arm, hand, or leg, especially on one side of the body

•             Sudden confusion

•             Trouble speaking or understanding speech

•             Sudden trouble seeing in one or both eyes (such as double vision, blurred vision, or blindness)

•             Sudden trouble walking, dizziness or lightheadedness

•             Sudden loss of balance or coordination

•             Sudden severe headache with no known cause

•             Vomiting

•             Loss of consciousness

•             Spinning sensation (vertigo)

•             Sudden collapse

•             Seizures (in a small number of cases).

If you suspect you or someone you know is experiencing one or more of these TIA symptoms, do not wait for the symptoms to worsen or improve. Call 911 immediately. It is impossible for you to know whether these are symptoms of a TIA or signs of something more serious, such as a stroke.

A TIA is different than a stroke. After a TIA, the blockage breaks up quickly and dissolves. Unlike a stroke, a TIA does not cause brain tissue to die.

The loss of blood flow to an area of the brain can be caused by:

•             A blood clot in an artery of the brain

•             A blood clot that travels to the brain from somewhere else in the body (for example, from the heart)

•             An injury to blood vessels

•             Narrowing of a blood vessel in the brain or leading to the brain

High blood pressure is the number one risk for TIAs and stroke. The other major risk factors are:

•             Atrial fibrillation

•             Diabetes

•             Family history of stroke

•             High cholesterol

•             Increasing age, especially after age 55

•             Race (African Americans are more likely to die from stroke)

People who have heart disease or poor blood flow in their legs caused by narrowed arteries are also more likely to have a TIA or stroke.

Treatment

The goal is to prevent a stroke.

If you have had a TIA within the last 48 hours, you will likely be admitted to the hospital so that doctors can search for the cause and observe you.

High blood pressure, heart disease, diabetes, and blood disorders should be treated as needed.

You may receive blood thinners, such as aspirin, to reduce blood clotting. Other options include dipyridamole, clopidogrel, Aggrenox or heparin, Coumadin, or similar medications. You may be treated for a long period of time.

Some people who have clogged neck arteries may need surgery (carotid endarterectomy).

Outlook (Prognosis)

TIAs do not cause lasting damage to the brain.

However, they are a warning sign that you may have a true stroke someday. More than 10% of people who have a TIA will have a stroke within 3 months. Half of these strokes happen during the 48 hours after a TIA. The stroke may occur that same day or at a later time. Some people have only a single episode, and some have more than one episode.

You can reduce your chances of a future stroke by following-up with your health care provider to manage your risk factors.

When to Contact a Medical Professional

A TIA is a medical emergency. Call 911 or another local emergency number right away. Do not ignore symptoms just because they go away. They may be a warning of a future stroke.

When to Contact a Medical Professional

A TIA is a medical emergency. Call 911 or another local emergency number right away. Do not ignore symptoms just because they go away. They may be a warning of a future stroke.

Young lupie NEEDS OUR HELP

I was checking for new lupus videos on youtube and I came across this sweet scared young girl who made a vlog on youtube reaching out for help.  Her ANA was negative and she said she thinks she has lupus.  Her doctor told her she had fibro, did not refer her to a rheumatologist and threw some cymbalta at her with no explanations.  WOW.  So I made this.  lol, I'm still waiting for her to see all the people who have written to her since at youtube!  I told all my lupie friends online and they have reached out to her as well, this was a couple days ago and we still haven't heard anything!

Here is our new friend's youtube video!  If your reading this please reach out to her.  We all need all the support we can get, especially the young lupus likes to go after so mercilessly.
She is tara1028426 at youtube.  Here is her video:

Thank you all....Much Love, Julie

My music videos about LUPUS!

Hope you like them.  The first one is about lupus support groups online and about lupus symptoms and is done to Carole King's "You've Got A Friend" who graciously allowed me to use her song and gave her sign off on the video!  That was SO exciting!  Here is the musicvideo!

And here is the musicvideo I made about the 11 symptom criteria used to diagnose lupus.  I hope you guys like it.  Watch out, lol, theres one part that gets really REALLY loud!

Thank you so much for watching!    HUGS, Julie

This is my Lupus! & See My ACTUAL ANA LABS & Vlogs

My major complications with my lupus are cranial neuropathies, caused by damage to the myelin sheath on the cranial nerves, severe peripheral neuropathy, anemia, kidney damage is in remission, extreme photosensitivity, vascular lesions, rashes, hives, vasculitis, constant viruses causing muscle weakness, plantar fasciitis from connective tissue damage, retinopathy, and I'm sure I'm forgetting some...OH lupus fog, lol, reynauds, livedo reticularis, hair loss, joint and muscle pain, fatigue, gastroparesesis...I'll come back later...  I take 22 medications a day.  I also have osteoarthritis, cervical splondyosis, diabetes, hypertension, pcos, pernicious anemia.  Again I'm sure I'm forgetting..so I'll just say, lupus fog.

I just fired my rheumatologist for IMO undertreating my lupus.  For lupus I take 400mg plaquenil, meloxicam and usually 40-60mg of prednisone during flares., which so far has been about 5 times a year.  I already have cataracts and a definite love/hate relationship with the stuff.  It's the best worst drug ever!

I'm on a mission to get Benlysta.  I found a new rheumatologist who will prescribe Benlysta and has an infusion center in his office.  I don't understand why my previous rheumatologist refused to treat me with any biologics or imuran or methotrexate.  Instead he's continued to treat me with high doses of prednisone.  I thought those other meds were instead of.

My ANA is and always was highly positive.  I have had trouble with the titer ANA test and have gotten messages from the lab that they cannot test my blood due to immune complexes.  My rheumie said it's because the ANA in my blood is too high.  They started using the direct ANA to test my ANA and it is always positive (once it was a low positive, just once) my smith antibodies and double stranded antibodies on the ANA panel are highly positive so I was dx'd early on during my first big flare in March 2010 by my dermatologist who did a couple core punch biopsies from a couple of my rashes from the sun (UV).  At the time my rashes and skin were so bad that I tested positive for porphyrins in my urine and I still need to do the more detailed testing but I've not done it yet.  I need to.  Bad girl.  Bad.

Anyway my blood platelets are high instead of low but I still have trouble with blood clotting.  I understand that happens sometimes with lupus.

My problem with getting more agressive treatment lies in the fact that my complements are not usually low and my sed rate is not usually high.  I don't know if that is a prerequisite to being treated with something other than plaquenil and prednisone but I aim to find out.  Oh yeah.  I'm on a mission to try Benlysta.

My goal is to have quality in life.  I'm married 23 yrs this month to a great understanding guy, have two children, one grown, one only 11, I'm 50 yrs old, live in Arizona, and the trigeminal neuralgia and cranial neuropathies especially are eating away at me.  I worry about cns lupus, I worry about tia,s and strokes since my grandmother had undiagnosed lupus, and so far I'm eerily following in her symptoms!, and she suffered hundreds of tia's in her later years, which I am approaching.  We used a cane at the same time, had nerve damage and diabetes at the same time, skin issues and lesions and vasculitis, livedo reticularis, blood clotting problems, reynauds.  It's unbelievable.

It's PULLING TEETH to get my doctors to put a stamp on the cause of my cranial nerve issues.  I have trigeminal neuralgia (it comes in clusters of attacks), geniculate neuralgia, have had Bells Palsy twice, burning mouth syndrome, distortions in taste and smell, vagus nerve damage symptoms and some autonomal damage as well.  I take anti-seizure medication for it and prednisone.

I just think there must be a way to nip it in the bud instead of wait for more serious cns problems.

That's my story.  I spend most time at home.  My home is my castle since I can't go out in the sun often., and I'm sick alot.  You lupies know how it is.  One minute fine, one minute sick.  I am waiting the two yr wait for my SSDI hearing and I was denied twice.  I'll blog about that.  I contacted Senator Quayle's office and they inquired with the SSA for me and I have an attorney, so I'm hoping for disability soon.  I am involved as much as I can online at support groups and gearing new people I meet towards meeting others like me with lupus online so they can not feel so alone.  I make music videos when I can to help create lupus awareness.

If you made it this far, lol, thanks for reading.  I hope something I say will help someone else with the same problems or questions.  I'm always here and at youtube and answer all my mail.  I'm just a lupie looking for living a better life and managing this dreaded disease.

Here are my videos and under them I will put up my ANA labs from March 2010.

((((HUGS))))  Love Julie

Flesh Eating Discoid Lesion Comes Back

The Rash Came Back!

I thought I got rid of THIS horrid itchy vascular lesion about six months ago, but it's back for another appearance.  It started itching and forming last week when I had the mild chicken pox virus (I got from my son - who YES had the immunization) and I have had shingles before...So here's the pics from today, Saturday, June 16th, 2012.  You can see my skin was already discolored from the discoid rash and lesion I had in the area the first time.  My rheumatologist thought it looked just like a necklace.  Some necklace, lol.