Looney Lupie Lady

Lupus Advocates lets make some calls and write some letters.  Here is a blog that helps point you to how to help the lupus cause! On the Road to a Cure

I just got back from Baltimore. I am TIRED. But I am so happy that I went. Thank you for your prayers!

God bless

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!

After a brief visit to Netherland.  Looney Lady is BACK!!! Yeah! Please give me a day to get rolling again.

God bless

Heather L

How appropriate that I talked about chronic fatigue this week.  The last two days my daughter has woken up for hours in the middle of the night.  I get up with her and try every trick I know to get her back to sleep. Then she drifts off about one hour before the rest of the kids awake. So no sleep for mom.

I went and had my hair cut today. That is a depressing gaunt. My old stylist left so I was shifed to a new person.  I hate that. It takes forever for me to feel comfortable with a stylist and now I get somebody that I didn’t even know her name. Anyway she was silent most of the appointment and cut my hair in a very layered feel. Not bad, but not what I was looking and asking for.  I hate it but I guess I am looking for a new stylist again!

Hair is a touchy subject for me anyway. My hair falling out was one on my first “in your face” symptoms.   As my first med started to make me feel better the hair loss ended and tiny sprouts of hair started to come back.   Now with the thyroid mess and the Sjogren’s I am in a flare again and my hair is falling out once again!

I think I will go to bed. With a prayer that we ALL sleep well tonight.  Good night my friends I pray that we all have a glorious day in the Lord!

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!

Good morning!  Yesterday was our first talk with the claims adjustor. Hmm? I will reserve my judgment for after the check is written. He doesn’t seem bad it is just he was very tight with what HE considered worthy of a claim or not. I talked with him and I had my hubby talk with him.  In the end we have two trees that need removed, 30% of the fence needs replaced, and the highest peek of the house is missing drains and flashing to keep out the rain.

Funny thing this morning. I have a 21 pound cat. He is a ragdoll and I love him! He is normally this laid back comfort seeking huge ball of gray fur. For whatever reason this morning he has been active. He playing with the baby. He will walk close enough for the baby to pet him then he rubs his head of the baby and walks out of range. He did this several times so I know he is doing it delibrately. Now he chasing a bracelt around of the kitchen floor. He is all puffed out like “oh I’m so big!”  Cats are cool. I also like dogs. Chris wants to get a Mastiff. Big dog but we are looking for a good quality breeder. Mastiff just fits our life style and personality so well.

I hope to add some lupus network sites and information tonight. God bless my friends.

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

Yep I am a gardener and that is why my lupus flared last year.  So this year I am going to have to get creative. How can I  continue to garden without causing my health to go down hill.  So what are the problems with gardening with lupus?

The first and most obvious, the sun. The sun causes flares and can make existing flares worse.  So to stay healthy I need to stay out of the sun. For my plants to stay healthy they are going to need sun. Hmmm? Because of how my garden is situated I will have to wait until the sun is mostly set of garden at night.  I went to the store today and looked at the solar lights. They are too dim, good for outlining steps, but not for working.  I am going to have to look into a stronger light system. I don’t really want electric lines in my garden.  I am going to have to go to Lowe’s and look around.  Are there any ideas out there?

The second is the work.  I just can’t guarantee that I am going to be able to work in the garden as much as it needs.  I started to help there last year.  I laid down 5 pages of black and white newsprint and mulched over top. The amount of weeding I needed for that area dropped drastically. I will definately be using the same techique for the other paths in the garden.  I am going to be looking for ideas like that this year. I am hoping that with some planning and forethought that the work can be reduced.

Finally (at least for now   is life interruptions.  Yes, life jumps in and smashes the best laid plans.  When appointments, (I pray not) hospitalization, kids needing help, yadda yadda.   So what should I do. I think that I might have to give up that picture perfect garden in my head.  I am going to readjust my goals. I would like my garden to produce food for the family. The perenials to make it one more year. Simple but worthy.

Well dear friends I have to go now. Take care and God bless you may health and peace fill your day!

Ahh! We had a horrible severe thunderstorm that brought with it strong winds. The strong winds stayed around for over a day. More than 65,000 people in our area were out of electricity. We were one of the proud and chilly members of the last group to get their electricity back.

The kids and I had a great day homeschooling and relaxing. Until I found out that our privacy fence knocked over on our neighbor’s car! About 30% of the fence is trashed. A tree also fell over on another stretch.  There is also flashing ripped off the steepest part  of our roof.

I would get upset but I called the insurance guy and he said no big deal. We have to pay the deductable but other than that we are covered.

The smoke from the fireplace really bothered my eyes and has brought on a migraine. I took some meds and I am going to get a good night’s sleep.  I wish all my aches and pains were as easy to get rid of.

That bring’s up a question. Do any of you have migraines? I have for about 10 years now. I noticed that last summer I was getting them every week or more. Now I only get them when I am sleep deprived or I have sun exposure. I was just wondering if any of you also had sun exposure migraines?

Take care friends and God bless.

Great news I heard from the dr that my CT scan was normal, except for the thyroid. This is good but… WHY do I still have lumps and bumps in my neck? I think I am dealing with Sjogren’s but no firm diagnosis.

Other than that the flare is still eating at me. My hair is falling out again. My skin hurts. I have never had this before. My shirt today was torture and yet I had to have something warm on.  I found several joints that have arthritic nodules in them. Some of the joints don’t even hurt, but I wonder if the pain is coming.

I will be happy to see the  rheumy next month. We need to do a little something more to get the lupus and  it’s nasty little friends under control.

On to better things! I went to MOPS (mother’s of preschoolers) today. They were talking about “The Five Languages of Apology” I got so much from the short talk about it. A friend of mine and I are going to get the book and do a study together.  Have any of you read the book? What do you think? I read “The Five Love Languages” and loved it.

Take care friends and God bless. May spring and warmer temperatures be right around the corner!