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Doctors have mood swings

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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!

Hunting for pain relief

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For any person with chronic pain there is an on going need for pain relievers. The first thing I was told was try warm heat, exercising and Motrin when needed. I tried the warm heat, stretching (never quite made it to exercising) and Motrin.

I realized this week that I am taking Motrin everyday sometimes twice a day. The pain is steadily increasing and settling into several joints. My right ankle, upper left chest, jaw, and neck are annoying-painful to I’m-crying-help! painful.  I hesitate to bring this up with my dr because I don’t want to be seen as “seeking pain meds”.  Afterall I just got through the whole this is lupus sorry I had to go over your head deal.

Do any of you have this issue? Have you had to go above the OTC pain meds? I don’t want anything that will make me dopey or addicted. I just need more joint pain relief at times.  Any suggestions would be highly welcome.

Thank you friends for you time. May the Lord turn this bad thing, chronic pain, to His good!  I pray that your week is wonderful! I am going to post some pics of my seedlings tomorrow! I hope you enjoy. God bless!

Chucking out the household chemicals!

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Okay I sit here tonight with a pounding migraine, so I will make this short.

Today a friend did a talk at our MOPS group and pointed out how horrible the household chemical were. I realised that any time I have cleaned recently I have gotten a red rash over my hands and arms. I also get a headache and I tend to be more dizzy. Is this related. I think so.

No matter I have a household of asthmatics and they really don’t need airborne chemicals irritating their lungs. So I am going green and less toxic.

I am looking for good sites, recipes, tips and ideas to make this work.

Thanks so much friends. If you could say a prayer that this nasty headache is gone by morning. Good night.

A prayer for you

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Dear friends in Christ.

You hurt, your life is not easy.

The Lord is with you!

You deal with more medical things in one week than most in one year.

The Lord is with you!

The way is dim and you need a Light.

The Lord is with you!

My friend I am here. Not for myself but for He who lives forever more.

The Lord is with you!

I share my favorite verse so that you too may feel His presence at every moment.

You need to persevere so that when you have done the will of God, you will receive what he has promised.  Hebrews 10:19

God bless

Heather Laurie

Decorating with brain fog

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I have had it with my gray walls. The owners before us painted everything gray. Not even and interesting gray more like quick-paint-it-so-we-can-move gray. Anyway I decided on the colors upstairs after a long struggle with my scaredy cat leanings to cream I decided on a autumn, warm orange.

So I get to Lowe’s and start looking around. I am a gardener and so I get sucked into the garden area. Then wander through the store trying to remember the things I wanted. Meanwhile hubby and kids are swirling around me. I stumbled on the paint aisle,”oh yeah I wanted paint”

Then I realize that my carefully chosen paint color was at home and with my fuzzy brain recently I couldn’t come up with the color, or the maker, and really anything. I stood in front of the paint chips ready to cry. Why is my brain so sluggish and fuzzy?!

Lupus! yes the beasty is goofing up my head.

I was able to find the paint I wanted thanks to my artist of a 11 year old. She went straight to the chip and handed it to me. This encourages me to make a plan though. I don’t want this to happen again.

1. Make a notebook: put ideas and pictures to take with me to the store.

2. Find a theme picture or make one. My best decorating experinces have been when I found a picture I liked and mimiced it. Or I found several items that I wanted grouped together. I glued them on one page so I could see them all at once.

3. Go shopping when least stressed. Going with all five kids and hubby was stressful and distracting.  Also be sure to have a drink with you and don’t be hungery.

4. Check out online shopping. I find that I shop only for my needs when I shop online. I also find that shopping for things like books is much easier. Recently when items are close together or brightly colored my eyes cannot make sense of it. It all blurrs together. Shopping online is much easier for me, as long as the picutures are good 😉

5. Take a trusted helper. Talk to your helper/hubby about what you want to get and accomplish. So that when you are at the store they can help guide you. You could even delegate some of the running to them so that you can save your strength.

We here is to happy comfortable homes! God bless my friends!

Falling asleep whether I like it or not!

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Welcome friends!  I was messing around trying to make things nicer and easier to use. Next thing I know Looney Lady. Is nothing but a white screen. AHH! Out to Barnes and Noble to buy a wordpress for dummies book. And poof I am up and running again. Thanks to my hubby! Love you sweetheart.

Monday morning I had to take my littlest M to her first neurologist appointment.  When I woke up I was shaking and my right leg seemed unstable. I thought about it and decided the trip to the zoo just wouldn’t work. So nix the field trip. But we did get to the dr and back home again.

By Tuesday morning I was still really tired and the leg was still acting oddly. The kids really wanted to go to MOPS (mother of preschoolers) and so off we go. The kids and I had a great time as always. After wards we went to a store closing sale , got lunch and went to my friends. The kids were playing and I sat on the couch. The next thing I knew it was 5 o’clock! I had fallen asleep mid conversation.  Lord bless her she watched over my 5 and her 4 kids for the two hours power nap.

Have you ever fallen asleep in an ackward place like that? I was more startled that I fell asleep so quickly and so hard. I mean there were nine kids playing literally right at my feet.

Well take care my friends. I pray you are all well!

God bless!

Parenting with chronic fatigue

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Parenting is exhausting. What do you do when you have extreme fatigue and illness dragging at you?  It is easy to tell yourself, “just one more thing” or “I’ll figure a way to make it happen.”  Then you have the pressures from our loved ones. A child not understanding why mommy can’t come out to play.  A husband who just came home from work and doesn’t understand why dinner isn’t done.

Are we failing in some way? In many ways? I sometimes think that.  I always think “I should….”  or “I could..”, “If I was super mom I would”  I call it the ‘oulds. Those things that didn’t get done that leave you feeling guilty.   Are we super women? No,  sadly we are not and despite what the TV would have you believe neither is the next door neighbor.  So revel in your lack of a cape. Let go of the guilt. The Lord has no intention of you sitting on your bum crying for one of the ‘oulds!

So you have fatigue problems. I do too and it can destroy a day. While sick this past winter I was able to get from my bed to the couch. That was it I slept for the day. Not well, with that type of fatigue sleep no matter how much you sleep it is never enough.  I was only able to relie on  my hubby to take over the kids. When I had to tell a child that I was too tired I always hugged them and asked them to pray for me. I told them the truth, that I wanted to get up but mommy’s body was too tired.

Children can better wrap their mind around a problem if you give them a solution. I told them to pray. My children love God and believe that the Lord will heal me. That was something they could trust in.  By hugging them and letting them know that I wasn’t happy too. The situation became mommy is not sleep because she wants to but because she is sick.

Be open with your husband and  tell him how you are feeling. Don’t expect his ESP to pick up on your slumped shoulder or cough to let him know. My hubby always tells me to talk to him and try to be precise. Like are your legs jittery? For him I believe it is because he is a fixer. Present a problem and he works out a solution. Most men are that problem oriented.

Even if you are left without the energy to help with the house or other normal “wife ” duties. Try to uphold your Biblical wife duties. That is to support your husband. Be of a mild, joyful manner so that he is uplifted by your very presence.  Together a wife and husband are incredibly strong even when one is sick. Think why else would Satan be trying so desperately to destroy that which God has put together. He knows that two in Christ are ten times stronger and will grow stronger as time passes.

Chronic fatigue is a limitation but it is not an end to a quality family life.  Take time to enjoy your children. Let them know how much you can do in advance, such as mommy can play cards with you but I can’t go to the park. Talk to your husband be clear and loving. Trust that he will protect and help you through you troubled times. Uphold him so that he knows you will support and encourage him at all times. Trust in the Lord.

God bless

The Looney Lupie Lady!

Medical Monday: Chronic Fatigue

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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

Medical Monday: Sjogren’s Syndrome

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Sjogren’s (SHOW-grins) syndrome is an autoimmune disease that affects more then 4 million people world wide. Nine of ten affected are women. It is a chronic illness where the white blood cells attack the moisture producing glands, and mucous membranes of the body. The chief complaint of Sjogren’s is dry eyes, and dry mouth. Though the entire body is affected.

You can suffer from primary Sjogren’s that usually affects a person in there 40’s. You can also suffer from secondary Sjorgren’s that is paired with another autoimmune illness, such as lupus, scleroderma, or another connective tissue disease.  This is a serious disease. There can be significate complications including loss of vision, tooth decay, and as much as a 44x higher  rate of lymphoma.

There are some lovely information organizations online. The first one I visited Sjogren’s Syndrome Foundation has information about the disease, how to live with it, how to follow up and treat the symptoms. They have an updated list of replacement lubricants.

I also visited Sjogren’s World This is a support and information organization. You can find forums, e-pals, articles. In fact under the links section I found a Very accurate description of what I am going through. Lynne’s page about Sjogren’s syndrome this link is to her story.

I am awaiting the results of my CT scan upon doing research I think it highly likely my lumps along my jaw may be directly related to Sjogren’s. I will find out later this week. Thank you everyone for your prayers and God bless!

Neutrogena Ultra Soft Hydrating Sunblock review

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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!