Apr 26

Doctors have mood swings

Posted in Lupus related

I am fed up with the run around. Back in October I found out I had Lupus and a handful of other autoimmune nasties. In early November I found out that I may have major thyroid problems. At each appointment and each phone call every dr was serious and urged me to get the testing and follow ups ASAP.

Now I have had all their tests. The results were not what they expected but not fine. The results were gray at best. Now when I am supposed to be having return visits I am getting the run around.

“well the dr thinks you can wait until mid June”
Not the last time I talked to the dr. Nurses would do well to get second jobs with the Mafia no one would be late on a payment!

“Your tests were basically fine, but you do need another ultrasound and biopsy.”
First cancer tests that are BASICALLY fine scare me. Would they like to have a basically fine cancer test?! The other thing that gets me is if I am so fine then why do I need a biopsy and ultrasound again?

The medical maze just keeps getting more convoluted. I hope that I am able to settle some of these issues with the drs when I see them. That is when? I see them. I’ll keep you updated friends! Take care and God bless!

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Feb 16

Medical Monday: Chronic Fatigue

Posted in Medical Monday

Chronic fatigue the plague of millions of people with long term illnesses.  Chronic fatigue is more than a passing tiredness. This is a bone deep, life altering, more than 6 months long fatigue.  There is also a difference between chronic fatigue or chronic fatigue syndrome.  I suffered from bouts of fatigue most of my life not truely understanding what was happening to me. I was often told by others, or by little nagging voice in my head that all I needed to do was push through the tiredness. If I only got up and moving I would be fine. Now that I have some clarity as to what was happening to my body I realize that pushing through a bout of chronic fatigue was not possible.

Fatigue happens to all of us at some time in our lives. The tired, weak feeling you get after the flu.  This should be transient and get better after the problem has been corrected.

Chronic fatigue is a more persistant fatigue. It lasts more than six months.  Often this will be the result of other diseases like lupus, rhuematoid arthritis, or fibromyalgia.  The fatigue is often the result of sleep disturbances, chronic pain and depression.  This is a vicous circle the lack of sleep causes more pain and depression which causes more lack of sleep. Yikes now I know why at the end of the night I feel like I was boxing a kangaroo.

Chronic Fatigue Syndrome (CFS) is persistant fatigue plus other medical symptoms. To be diagnosised with CFS you must have:

-fatigue that lasts more than six months

-substantial memory or concentration impairment

-sore throat

-tender lymph nodes

-muscle pain

-joint pain with or without swelling

-headaches of new type or pattern

-unrefreshing sleep

-aching after exercise lasting more than a day

Treatment of chronic fatigue is based around finding the cause or causes and removing as many as possible. In the end though many cases of chronic fatigue are there to stay.  There are some medications that are used to help with sleep particularly Anti-depressants, Cymbalta, Savella, and Lyrica.

There are also some alternative methods that can help.  Try a warm bath before bed use aromatic oils or candles if possible.  Talk your hubby into a gentle massage. Use a white noise CD to tame the odd noises that can awaken a light sleeper.  Try to exercise moderately several times a week.  Okay so I don’t get that one often myself, but I do find that if I stretch out before bed it helps with the night time cramps.

Chronic fatigue is real! You have a medical problem that needs to be treated and monitored.  Go gentle on yourself. The Lord has a plan for you where you are today. He knows your limitations and He know your strengths.

Psalms 62:1

My soul finds rest in God alone;

my salvation comes from him.

He alone is my rock and my salvation;

he is my fortress, I will never be shaken.

God bless friends, my your day be filled with the Lord’s grace and beauty.

Heather L

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Feb 5

Neutrogena Ultra Soft Hydrating Sunblock review

Posted in Lupus related, Review

Welcome friends. Since the sun is such a major problem with lupus I have to put a lot of thought into sunscreen. I don’t want to use a sunscreen that screams summer sports and has that distinct smell to it. I also dislike the oily feel that many of the sunscreens have. So I went looking at the drugstore to find a sunscreen I could use everyday.

Neutrogena Ultra Soft Hydrating Sunblock SPF 45
I got the pump version. There are other versions and various SPF strengths available. When I applied it I found that it was not an oily cream. It should be applied fifteen minutes before you go outside. It does soak in over a few minutes. I can apply make up right over it and not affect protection. It has a pleasant scent to it that fades soon after applying. But if you are very smell sensitive test it first! It is waterproof, and sweat proof. The label says it is PABA free but frankly I have no idea what that is. Enlighten me if you do!

Overall I am happy with it. I have had no breakout problems after using it for several weeks. The smell does not bother me. It helps protect me from the sun and I appreciate it. I have no intention of becoming a vampire! So this is a good one!

I am hoping to check out Land’s End UV protective clothing, hmmm just not sure when I can puppy dog eye them into letting me sample a shirt. LOL

Take care and lupies out there protect yourself in the sun!

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Feb 3

Parenting with a chronic illness

Posted in Life Rambling, Lupus related

How do you cope with parenting and a chronic illness? There is often chronic fatigue and or weakness with illness. You have to take medications often. Doctor appointments, lab draws. The list at times can seem endless. What ways do you use to get through the day. NO what things do you use to thrive!

!. Food There is an endless need for food and food preparation. Throw in any variant such as Celiac disease and you are forced to make all your food. The more mouths you have to feed also plays a role in food preparation.
Get some premade meals if you can. Or mixes that are easy to whip up. If like me, premade items are slim pickings. I make pancakes on the weekends when hubby is home to help. We often make double or even triple batches. The pancakes freeze well for a quick breakfast or pancake peanut butter sandwich :)
I am going to get the book that talks about one month cooking. I’ll let you know how that turns out.

2. Use your resources wisely. I have my husband help with food on the weekends so I can try to work beside him making ahead a meal for the coming week. I have a list of friends that I know if I wake up in the morning and have to take strong medicine for my lupus, or I am exhausted I can call on short notice and they will come watch the kids.

3.Never under estimate calling on the Lord for the strength to get through the day. There are times especially at the end of a grocery run that I over did it. I call on the Lord to help. I don’t use Him as a last resort rather I remind myself that it is His strength I live on continuously.

4.Dr appointments, lab draws, therapy Never lie about where you are going or why to your children. Don’t think of it as a scary thing but a trust issue between you and your child.

“Mommy is going to the hospital. I need the drs to help me feel better. I will be back as soon as I can. Draw me some get well pictures!” That was what I said to my little ones when I had chest pain and was on the way to the hospital. I was fine. Well other than the dratted lupus.

Other medical things may actually encourage an open interesting discussion of medicine. The charts are a great way to teach your child and yourself more about the body! Use what God hands you!

This topic will be continued in the near future. Right now I have a little one crying in her sleep. So I am doning the super mom cape and flying off to the rescue.

GOD BLESS!!

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Feb 2

Medical Monday: What is lupus?

Posted in Lupus related, Medical Monday

Welcome to the first Medical Monday. First understand I am not a doctor nor do I play one online. I am sharing this information that I have researched. I try hard not to give you the wrong info. If you find a problem drop me a line and let me know!

Lupus is an autoimmune disease. It is a chronic inflammatory disease that attacks your skin, joints, heart, lungs, kidneys and blood. It is more common in women than in men (8x more common). There are different types of lupus.

There is a skin contained lupus, discoid lupus or cutaneous lupus erythematosus. While this type does not attack the internal organs it can be disfiguring. About 10% of people that start with the discoid lupus and later also get systemic lupus erythematosus (SLE). There are also individuals with SLE that have the lupus dermatitis as well. I am one of them.

Then there is the more severe form systemic lupus erythematosus (SLE). SLE is a chronic attack on your system. You go through periods of flare and remission. When your illness is active it is life threatening. When in remission you are never truely healthy again just not actively ill.

There is a drug induced form of lupus. It comes most commonly from taking hydralazine (used to treat high blood pressure or hypertension) and procainamide (used to treat irregular heart rhythms). This is more common in men. Stopping the medicine should stop the lupus.

Finally there is neonatal lupus. A baby develops a skin rash over the first few months of their life. There is a rare complication of a heart block that can require a pacemaker. This is a type of lupus that like drug induced lupus should go away.

Normally when someone says they have lupus they mean they have the SLE or systemic form. That is what I have with discoid lesions. Lupus is not longer the death sentence that it use to be. That does not mean I will not die from lupus. Many people die from lupus or it’s complications every year. There have been NO new medicines to treat lupus in 50 years. Lupus affects us every day.

If you have lupus you will have to take medications everyday, usually multiple times a day. A person with lupus needs to stay away from stress, illness, and the sun. If you have lupus you will also have to see multiple specialist and take blood tests every few weeks. This is not an easy disease to manage. Throw in the chronic pain and chronic fatigue that drag at your body.

The symptoms are highly variable. Even the lab work can be highly different between different patients. There is an unfortunate tendency for patients to go years before getting a diagnosis and appropriate treatment. I got sick for the first large flare of my life when I was 20. I was diagnosed when I was 33. You do the math…. I spent too many years without the right diagnosis and no medication and treatment to stop the lupus from moving in and taking over.

I live with lupus. I deal with the hair falling out. The skin rashes that itch, flake and look horrible. I take medications everyday. Taking all the tests and drs appointments needed. There are so many that have worse to deal with. When I am feeling particularly whiny and grumpy. I turn to Do everything without complaining or arguing Phillipians 2:14

Not one of the easier verses in the Bible for me but highly useful.

God bless friends. Take care and good health!

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Jan 22

Gluten free living!

Posted in Gluten free and other allergy diets, Lupus related

I have Celiac disease. I also have two daughter’s with it and two other children that show sensitivity. So we are a gluten free house and have been for four years.  The children also show sensitivities to a large amount of other foods.  So in total we are gluten free, casein free, soy free, and dye free. Now the littlest one is being tested for other food allergies such as apple, banana and citrus. Yeap it is hard to feed this crew.

I wrote on my other blog reasons to stay on the GFCF diet which is gluten free just add on the casein. GFCF mom of many I think it is very important to add for those of use with other autoimmune issues like lupus, not staying on diet will cause you to flare more often and worse! That is a vitally important reason to stay on diet.

I fully plan on living a long as healthy life as I can. I have 5 little ones to watch and guide as they grow. I have taken a much more proactive and grateful turn with my health. I am grateful that I have the health I do. My kidneys are not affected, thank you Lord. I am being proactive. I am eating on diet and beginning to lose weight healthfully. I am also trying to stretch and use my sore joints as much as possible. I don’t want therapy or loss of movement.

For those who need a gluten free diet as well I have found a couple of blogs that are really good! The gluten free girl has lots of ideas and recipes. She also has a book coming out very soon and one on the market already.

Gluten free Gobsmacked had the first Christmas cookie recipe that truelly reminded me of my childhood cookies!

The only down side to most of the gluten free recipes and blogs I have seen is they are for couples or small families. Most of the recipes are for about 4 people max. So if you have a large family like mine you need to double or more. The more you swap out ingredients the chancier the outcome of these recipes becomes.

I wish you all good cooking! If you need to watch you foods please do. The more you care for your gut the healthier your entire system will be! God bless!

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Jan 19

My life of lupus melodrama

Posted in Life Rambling, Lupus related

Hi everyone! I have lupus. Yup I am still getting use to saying that. It almost feels wrong. I keep waiting for the dr to call and say “oops we made a mistake it’s all in your head”  Hmm sounds like I need therapy? No not really, I think…

When I was in middle school I started having problems with super cold hands and then feet. I heard the name Reynaud’s but no one was really upset, so I forgot.  Later I joined the Navy after 6 months of fun and sun in Puerto Rico, I got sick.  I had a strange face rash and aches but worse of all I was passing out. I went from military hospital to military hospital. Of note Walter Reed is as bad as the media portrayed them! I finally got a medical discharge with no reason for my problems. Just a note in my file that says I show labs and signs of a medical problem but since they were unable to affect it with medication it was deemed at least partially “A white hysterical female” psychiatric problem.

I did find one wonderful thing in the Navy! My husband. We were married.  We have had seven children. Two of my babies are in heaven one I believe is directly linked to lupus.  Other than my first pregnancy every baby was a hard fought battle. After my last little one over a year ago I began getting really sick and run down. Don’t laugh there is a difference from being tired parenting 5 children and this kind of tiredness.

I started to redo the garden in the spring. Then my hair began falling out! ECK! Okay I had one gray hair and I didn’t dye it. I’m not particularly vain but losing my hair scared me. The dr didn’t seem overly interested. The summer wore on I got sicker and sicker with each weekend’s gardening. Finally I stopped.  I went for one last try after I was put through the ER for chest pain. The dr, this time was a sub dr,  He kindly told me I was that age to begin losing my hair and getting aches and pains…. I got a second opinion.

On my 33 birthday I got the call from my rhuematologist. She told me I had Lupus, Celiac disease, and most likely Mixed Connective Tissue Disease. I actually cried,  for happiness. Strange I know but know I knew I wasn’t crazy! I had fought for over 18 years with thinking I was being melodramatic, or a loser. I am neither! I also now had a chance to try medicine to help stop from getting worse, and a chance at feeling better.

My lupus melodrama has been a long road. It’s not over. Sad to say my experience is not terrible different from many with chronic illnesses.  I have just picked up book about chronic illness called “Life disrupted: Getting real about chronic illness in your twenties and thirties” by http://www.achronicdose.com/ her weblog is

God bless friends see you tomorrow!

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