Why Can't Long Thick Hair Be a Symptom?

 

 

I wish the doctors would have said to me, "Stephanie, I am so sorry but one of the side effects of a Lupus flare-up is long beautiful thick healthy hair."  Or, "You will have to eat cheesecake everyday to stay healthy and strong."  It's annoying that most symptoms of Lupus are bad.  The picture on the left is me a few days after Jackson was born.  My hair was long and thick and wonderful.  I expected it to thin a lot after the pregnancy was done but then it got a little extreme.  Six months later on the right I was finally able to get it cut since the Lupus flare finally started getting better.  I actually like the length now.  It is super easy to care for.  And, I like the dark blond color.  I had to get rid of the highlights because I didn't want to sit in the beauty salon under the fluorescent lights for hours.  Unfortunately, now my hair is very thin and falls out in clumps.  I dread washing my hair because I know my hands will be covered in hair.  My poor husband has to clean out the drains all the time.  It makes me sad but they say after the flare-up is over my hair will stop falling out and grow back.  I hope that starts soon or I am afraid I might be bald!

New Symptoms? TMI

Last night was rough for me.  I was the only one up in the house.  The baby was asleep and so was my husband; pretty sure I heard the dogs snoring too.  I was up with stomach cramps.  Now before you read on this might get TMI.  I don't remember really what cramping feels like during that time of the month.  Mostly because I didn't get them too bad to begin with.  Then came Jackson.  For the last 6 months since I really haven't had any cramps.  I am trying Mirena so maybe that has helped (or hindered).  Who knows.  Anyway, these pains are in the middle of my stomach I think and they are fast shooting pains.  They aren't really super painful but they are annoying and worrisome.  I took some Tylenol and was able to fall asleep but it was very restless.  I wont even mention the hemorrhoid I think I might have.  I have never had one of those before but there is always a first time.  I looked it up and saw that these are more possible problems from the Lupus.  It just keeps getting better doesn't it?  Sorry to gross you out! 

I am waiting for the doctor's office to open to see if I can get in.  Better safe than sorry.  Plus, I am still waiting for the kidney results so I hope they came back.

Plus, I want to talk to my doctor about anxiety.  It comes and goes but, oh boy, when I feel it, its horrible.  That also keeps me up during the night.  It takes me forever to fall asleep because my mind is going too fast.   I think about everything, big or small, important or not... it is getting old. 

We will see what they say. 


*** Update****

The doctor told me to stop taking my Lupus meds for a week then easy back into them.  Apparently the meds are very rough on my body.  So far today feeling better but I had already taken my med this am.  I'll give it a day or two and call back if it gets worse.

Damn You Aerosmith!

I just heard this song on the radio.  Normally I won't be posting twice in one day but I wanted to see the lyrics.  This is for Jackson!  It is so perfect for how I feel about him and it brings tears to my eyes.  He is so precious and happy.  I can't imagine life without him, or if I am honest, without me.  My biggest fear isn't death, it's leaving my loved ones behind.  (More on this later)

I could stay awake just to hear you breathing
Watch you smile while you are sleeping
While you're far away and dreaming
I could spend my life in this sweet surrender
I could stay lost in this moment forever
Where every moment spent with you is a moment I treasure

Don't want to close my eyes
I don't want to fall asleep
Cause I'd miss you babe
And I don't want to miss a thing
Cause even when I dream of you
The sweetest dream will never do
I'd still miss you babe
And I don't want to miss a thing

Lying close to you feeling your heart beating
And I'm wondering what you're dreaming
Wondering if it's me you're seeing
Then I kiss your eyes
And thank God we're together
I just want to stay with you in this moment forever
Forever and ever

I don't want to close my eyes
I don't want to fall asleep
Cause I'd miss you babe
And I don't want to miss a thing
Cause even when I dream of you
The sweetest dream will never do
I'd still miss you babe
And I don't want to miss a thing

I don't want to miss one smile
I don't want to miss one kiss
I just want to be with you
Right here with you, just like this
I just want to hold you close
Feel your heart so close to mine
And just stay here in this moment
For all the rest of time Yeah yeah yeah

I don't want to close my eyes
I don't want to fall asleep
Cause I'd miss you babe
And I don't want to miss a thing
Cause even when I dream of you
The sweetest dream will never do
I'd still miss you babe
And I don't want to miss a thing

I Don't want to close my eyes
I don't want to fall asleep
Cause I'd miss you babe
And I don't want to miss a thing
Cause even when I dream of you
The sweetest dream will never do
I'd still miss you babe
And I don't want to miss a thing

Don't want to close my eyes
I don't want to fall asleep
And I don't want to miss a thing

What is Safe? Over the Counter Meds

So last night I had a huge headache and I didn't know what I could take for it.  I am worried about mixing medicines so I just went to bed.  I found this article below on the University of Maryland School of Medicines website and it was easy for me to read and understand.  I wanted to post it for me to find it easily.  It is a good reminder for my family, friends, and coworkers of my symptoms.  No, I'm not being lazy, I'm tired...very tired.  Or, no, its not that I don't want to lift that thing, my wrists hurt... And this is why.

Systemic lupus erythematosus

Introduction:

Systemic lupus erythematosus (SLE) is the most common form of lupus. Lupus is an autoimmune disease, meaning that the body' s immune system mistakenly attacks healthy organs and tissue. Lupus can affect any part of the body, causing inflammation and damage in joints, skin, kidneys, heart, lungs, blood vessels, or the brain. More than 90% of people with lupus have skin rashes, often triggered by exposure to the sun, and about half have kidney and lung problems. Because lupus affects the joints, it is considered a rheumatic (arthritis) disease.

Signs and Symptoms:

Lupus is often accompanied by the following signs and symptoms:

• Extreme fatigue
• Painful or swollen joints (arthritis)
• Muscle pain and stiffness
• Unexplained fever
• Skin rashes, including a characteristic "butterfly" rash over the nose and cheeks
• Kidney problems
• Hair loss
• Nausea, vomiting, abdominal pain
• Mouth and nose ulcers
• Headaches, migraine, seizures, stroke
• Anemia
• Depression
• Photosensitivity (sensitivity to sunlight)

Treatment Plan

There is no known cure for lupus. However, your team of health care providers can develop a treatment plan to prevent flare-ups, to treat them when they do occur, and to minimize complications.

Drug Therapies

Your health care provider may prescribe the following medications:

• Corticosteroids (such as prednisone), to quickly bring down inflammation. Side effects from long-term use include increased risk of osteoporosis.
• Nonsteroidal anti-inflammatory drugs (NSAIDs), to control pain, swelling, and fever. These drugs include ibuprofen (Advil, Motrin), aspirin, and naproxen (Aleve). Ask your doctor before taking any of these drugs over the counter.
• Drugs that suppress the immune system, to help keep the disease under control and prevent flares, for severe cases of lupus. These drugs include cyclophosphamide (Cytoxan), and azathioprine (Imuran), mycophenolate (CellCept), and methotrexate.
• Antimalarial drugs, to treat fatigue, joint pain, skin rashes, and inflammation of the lungs. One of these drugs, hydroxychloroquine (Plaquenil), also helps prevent flares.

Complementary and Alternative Therapies

A comprehensive treatment plan for lupus may include a range of complementary and alternative therapies.

Nutrition and Supplements

Eating a healthy diet with plenty of fruits, vegetables, and whole grains is important for anyone with a chronic disease. People with lupus may also benefit from the following strategies:

• Eat more antioxidant-rich foods (such as green, leafy vegetables) and fruits (such as blueberries, pomegranates, and cherries).
• Avoid refined foods, such as white breads, pastas, and sugar.
• Eat fewer red meats and more lean meats, cold-water fish, or beans for protein.
• Use healthy cooking oils, such as olive oil or vegetable oil.
• Avoid coffee and other stimulants, alcohol, and tobacco.
• Drink plenty of fluids.
• Exercise moderately at least 30 minutes daily, 5 days a week.

The following supplements may also help:

• Flaxseed (30 g per day) contains omega-3 fatty acids and alpha-linolenic acid, which may help decrease inflammation. One preliminary study suggested that people with lupus who took flaxseed had better kidney function -- important because kidney disease (lupus nephritis) is a major complication of lupus.
• Fish oil, which also contains omega-3 fatty acids, may help decrease inflammation. Although evidence is mixed about taking a fish oil supplement, doctors do suggest that people with lupus eat more fish. Cold-water fish, such as salmon or halibut, are good sources. Talk to your doctor before taking a fish oil supplement if you also take anticoagulants (blood-thinners), such as warfarin (Coumadin). Eating fish doesn' t cause the same risk.
• Dehydroepiandrosterone (DHEA), start at 5 mg three times a day and work up to 100 - 200 mg per day for 7 - 12 months. Do not take DHEA without your doctor' s supervision. DHEA is a precursor to the hormones estrogen and testosterone in the body, and several clinical trials show that it may help improve symptoms of lupus. However, side effects -- including acne, increased facial hair, and excessive sweating -- were common. DHEA may also lower HDL (good) cholesterol, which could contribute to heart disease. Because of DHEA' s hormone-like effects, people with a history or higher risk of breast, uterine, ovarian, or prostate cancer should not take DHEA.
• Calcium and vitamin D supplement, 1 - 2 tablets daily if taking corticosteroids. Corticosteroids can raise the risk of osteoporosis, and calcium and vitamin D can help keep bones strong.
• Methylsulfonylmethane (MSM), 3,000 mg two times per day, may help prevent joint and connective tissue breakdown.

http://www.umm.edu/altmed/articles/systemic-lupus-000161.htm#ixzz2Ahx7Ptmw

It's Dracula, No Just Momista

Happy Halloween at Sea World San Antonio

 

This afternoon my husband and I took our 6 month old to Sea World.  Sea World does a nice job for the holidays but I will say this year was a little disappointing as they were lacking some decorations.  I wish there were move characters to get pictures with.  At night the really spooky stuff comes out but would it hurt to have a few more characters for the little ones?  And, what happened to dressing up for the holiday?  I think I could count on my hands how many children had costumes on yet everyone loved Jackson's costume.  That's all part of the fun.

Today I was outside walking for 2 hours!  That's pretty impressive considering I have been pretty much in the house for 2 months (except running some errands here and there).  It felt great to get out in the fresh cool fall air.  I remembered to use my sunblock but I also realized I will probably smell like sunblock for the rest of my life.  Maybe they could make a sunblock that smells like something other than what it is.  Michael Kors sunblock would be wonderful. 

I was pretty worried about the sun but as you can see, I sported a nice hat.  I worry that my fear of the sun will turn me into a vampire lady never wanting to leave the house, waiting for the sun to fall so I can go outside and not worry about a flare up.  I was going to call this post "turning into a lady of the night" but realized that's probably not a good idea.  Definately not what I am going for.

Time to cap off the night with a little American Horror Story (my DVR is going to explode soon if we don't get some shows watched).  Boo!

How I Found Out

This is my first post on my new blog.  I am testing it all out but wanted to start with my story with Lupus.  It sounded like a topic I knew I could share and have shared many times so this should be easy, right?

In August 2012, I was feeling tired.  I got a nice rash/hives on my head in my hairline.  Then it spread to my ears.  I thought it would go away but it didn't, it got worse.  I went to a med clinic here in San Antonio (yes, they are real doctors) and I was diagnosed with SHINGLES!!! Ewww, I felt dirty.  I was given meds to help with the itchy rash and they started to go away but then about a week later I started getting fever blisters on my bottom lip.  I had never had fever blisters before but I figured it makes sense since I had the shingles.  I made a trip back to the med clinic because I couldn't eat and the blisters were not going away.

In September 2012, the doctor at the med clinic gave me penicillin for the fever blisters and they went away BUT my whole body broke out in a itchy rash.  My arms and legs were so red and itchy and nothing would help.  I went back to the med clinic and was told I had a drug reaction to penicillin because I was allergic (I had never been allergic to anything in my life).  The doctor said it will go away on its own (took 2 weeks). 

I thought I was feeling better, just a little cold and ear ache but nothing I haven't dealt with before.  Work offered the flu shot and I got it like I do every year, WORST mistake and BEST blessing ever.  Most people get the shot and a sniffle and move on, I couldn't move on.  In fact, I am still fighting the flu.  Thanks to the flu shot I went back to the doctor one more time.  By then I was starting to get a nice little rash on my cheeks.  He said I needed to go to the dermatologist.

After a month or so of missing so much work, not being able to lift my baby because I was in so much pain I was off to the dermatologist (well the best PA I could find).  It is hard to be a new patient when you need to be seen right away, many places couldn't see me until FEB!  REALLY?  One look at me and she thought Lupus.  I guess it was more obvious than I thought.  She ordered lots of tests through blood work and urine.  I was given creams for my face which helped clear it up in a week. 
The PA called me on a Thurs to give me the results.  I had lupus and I needed to go to the rheumatologist soon. 

Here are two pictures I took of the rash:

This one is good so you can see I was healing.  The rash on my cheeks peeled off.  Man I was so swollen!

 

 Here is another of my swollen face.  I dont even know if this was the beginning or end of the rash!

 

So that's my story for now.  My wrist hurts from what I have typed before.  I think its the rain.