Bad Day :(

So today I had a really horrible, emotional day. I cannot even blame it on the weather...it was nice and sunny and not too cold/hot. My DH was home for the weekend and we had "words". I hate fighting with the hubby...nothing good ever comes out of it. We have been super stressed lately regarding our living separately until the school year is over, the upcoming move out of town, kids, money, kids, housework, kids, and did I say kids! We have 3 girls that can all be very sweet and very NOT! Lately we have been dealing with a Bi-polar child and that in itself is difficult, throw in a 6yr old sassy pants and a 16yr old drama queen and you can just imagine our house! Well, it finally hit me today and I was really rather ugly. I said some mean things that could have been said in a much nicer way and for that I am sorry. I was so full of emotions and struggled with finding the right way and words to get it out...obviously I didn't do it well. The hubby is in another room ignoring me :( I am sure we will get over it, we have been together almost 20 years, but I still don't like the strained atmosphere.

I have been feeling fair to poor lately. The weather has been doing funny things lately and with that...my body has been too. I have had lots of additional emotional stress and it is taking a toll on my body. I cannot imagine that 1 year ago I was going through all this and working! There is no way that would work now. My day consists of taking girls to school, coming home and sleeping(trying to), picking girls up, trying to help with homework, trying to either cook or supervise the cooking of dinner, supervising bath time, bed time and than trying to get comfortable enough to go to sleep so I can start it all over again. Whew...wears me out just typing it! Oh and of course you cannot forget all the drama 3 girls bring into the house daily from school/friends!

Maybe I need to make an appointment with the doc and see about changing my depression meds...the Celexa is not working as well as the Cymbalta did. But with having no insurance right now that's easier said than done! Plus the Cymbalta is 3-4 times the amount of $ that I can get the generic Celexa for. I am kind of in a holding pattern right now until I can sign up for health care. Since I am uninsurable, I have to sign up for something called Access TN for people who cannot get health insurance the regular way due to their health. The problem is you have to wait 6 months without insurance before you can do this...so stupid! So I can send my application in at the end of April, than hopefully once I get it I can have a good appointment with the doc before we move and try and get some of these meds figured out.

(((Soft Hugs)))

An Afternoon at the Park

The hubby and I took our 2 youngest to a local park yesterday. With all the cold, icky weather the South has been receiving lately we wanted to enjoy a nice day outside. I think everyone else in our town felt the same way, lol!

I had been out of the habit of sunscreen, hat, long sleeve shirt...etc. So it took me a little longer to get out! I found some sunscreen that I LOVE...it is by Neutrogena and it sprays on light and doesn't feel icky. It is more expensive, but when I have to wear it day in and day out, it's nice to not have the heavy, greasy feeling. I opted for a sun visor instead of the full brim sunhat and a light long-sleeve sweatshirt. We were out for about 2 hours and so far so good! I was able to walk a little ways before getting really tired and get some pictures of my hubby teaching our youngest how to ride her new bike with no training wheels.

For valentines day, my hubby bought me a beautiful ring I have been wanting...yesterday it fight great, today not so much :( I have lots of swelling and joint pain in my hands today, not sure if it's from yesterdays outing or not. Had a hard time getting to sleep last night....my brain just kept going and going. I finally dropped about 1am, I really dislike when this happens. I feel all achy and fatigued today :(

I did a google search for some other Lupus blogs and was happy to find some neat ones. I have included links to their sites on the right, so if you get a chance check them out. Lupus is different for everyone, so it's nice to hear about how other Lupies are living!

((Soft hugs))

Starting A New Book....

The Last Lecture by Randy Pausch with Jeffrey Zaslow is what I am going to attempt to read next! My oldest daughter had this book as an assignment in her Honors Health class at school and she said it was pretty good. I will be sure to let you know what I think..LOL!

So the South is getting ready for another "snow event" as the weather man calls it! Had the capri pants pulled out this last week for 70 degree weather....now I am back to the long pants again! Wish it would settle within 20 degrees, it's killing my joints!

Thought I would write a little bit about a few of my supplements that I take. I purchase them from a company called Pure Caps. It is for medical personnel only, but many physicians sell them out of their office. I am lucky that I am able to get them at cost with my nursing license! They are made with all natural materials in vegetable capsules and are great for digestive problems. I am currently taking their Nutrient 950 which is a super duper multi-vitamin and liquid B-Complex which tastes like orange juice....lol! I have taken many other of their supplements, under my physicians care, such as Adrenal supplements, Stress relief, DHEA, Calcium, etc. I cannot rave enough about them. I recently ran out of my MVI and stopped off at our local "wally world" and purchased some generic ones and I ended up throwing them away! They were horrible and I felt the effects of them for hours....yuck!

(((Soft hugs)))

Love this book....Despite Lupus!

I just finished this book by Sara Gorman. It was GREAT! I really enjoyed it and have TONS of highlights and virtual "dog ears". Not only was it a book that was positive, but it really hit home with me. I purchased for my Blackberry (Kindle) and wish that I had bought the paper version so I could have it in front of me, the electronic books are still new for me! If you would like to check out her book, you can check out her blog as well HERE.

One of the things that I took away from her book was to make a "symptom journal". I have been doing something like that in my "Healthminder" journal, which is great, but it was just a little too much writing for me. Not to mention I have filled one full journal already, so I was looking for a way to conserve paper as well as make it easier on me. I copied some of her info from her example, added some of my own, and now have a Symptom Journal that's on 1 sheet of paper front/back that all I have to do is check everything. Here is a sample of what hers looks like..

She is a great source of information, filled with helpful hints and has a very positive attitude about living life with Lupus/Chronic Illness! So check her out, you won't be sorry!

We have had some CrAzY weather here in the South lately, which is NOT good for my Lupus! I am still waiting on my 6-month wait with no health insurance before I can apply for Access TN. It is an insurance that I do NOT have to qualify for, but still pay monthly premiums as well as co-pays...but I guess something is better than nothing at this point. I was able to get a little help on some of my prescriptions through a Rx program! Now if I could just find a way to get all of my wonderful supplements even cheaper!

On the family life side....it too has been CrAzY! My dear hubby is in another city, 90 miles from us during the week, and comes home on weekends. We have been doing this for about 3 months now and have 4 more to go until we will all be under one roof again! I am very blessed with a teenage daughter that helps with her 2 younger sisters. I seriously don't know how I could even function without her help. I have an 11yr old daughter as well as a 6yr old. They are all wonderful girls and each help Momma in their own way. My sweet hubby comes home on Friday nights and does housework, grocery shopping and cuddling during the weekends and than heads back out on Monday morning. He is a God send! I really appreciate all of his help!

Sorry if I am jumping back and forth...I am suffering from Lupie fog today and I keep losing my train of thought :) So today was my youngest daughters 6th birthday! My Mom took her lunch and ate with her at school than went back at snack time and took cupcakes and juice for all the children in her class. I am very thankful that she was willing and able to do so. Today was not a very good day for me...the weather went from 70 to 2o's in less than 36hours....my bones are protesting! I was able to get dressed and brushed my hair/teeth...but that's as far as I got today. Sometimes I really find it hard to stay positive....but I am trying to find the "good" in everything....so today's good is that my Mom got to spend some much needed time with her youngest Granddaughter and I got to snuggle and tuck her in tonight after looking at the pics that my Mom took today at school...a great BIG THANK YOU!

Sorry I've Been MIA

Wow time flies by when you are in a Lupie fog! To do a brief catch up....I was denied on my first round of Disability, really no surprise. They said although I am no longer able to do my profession of nursing, due to my age there should be something else I can do to support myself....um hello! I couldn't support myself and 3 children on what I was making as a nurse by myself, I certainly am not going to be able to find an employer that will pay me a lot of money, allow me to work no more than 5 hours a day, come to work when I am able, sit down/stand up/walk around/lay down when needed. So frustrating! The whole process of filing all those forms is really depressing! I have tried to stay positive through the last 6 years and to list everything on paper that is "wrong" with you is a drag. So since June I have been in and out of a funk. Lots of flares....headaches...pain and lots of changes going on.

The girls and I are moving to another place in our town in 2 weeks. It has really taken a toll on me physically and emotionally. Our family is separated right now for awhile until after the school year ends and we can be together again. Lots of sleepless nights, stress & drama here lately.

My DH and I went to a local Lupus support group meeting yesterday and they had an attorney speak about filing for disability and the difficulties of it with Lupus. He was full of important information and I have decided to use him to fight the next step with SS Disability. I have to go file an appeal tomorrow and make an appt with his office and then we will see what is next.

There was another woman, around my age, there at the meeting that is having problems filing as well. She is a new mom and was really discouraged about feeling like she is "cheating" her child out of things b/c she has Lupus. I remember just a few years ago thinking the same thing, and at times it sneaks up on me again, but for the most part I have tried to explain to each of my girls. My little 5yr is so sweet....her teacher asked her if her Mommy (me) was going to be able to come on a field trip with the class and she said, "Only if it's not in the sun and if she feeling good b/c my Mommy has Lupus". She is my little advocate! Gotta love her! My DD#2 has some medical issues of her own and we have just recently been able to get her stable in her own issues. She can be supportive at times but as with most kids her age (11yr) she is worried about herself. My oldest (almost 16yr) is good to help whenever I need her to, if I can get her out of her room! She is going through a phase right now and I try to not rely on her too much, just when needed.

I have recently lost my health insurance and as many people with Lupus know, I am now "un-insurable"! I have to be without insurance for 6month before I can apply for the new medical program that my state has. I have to qualify for it, thankfully we just make it with my DH income! Until than I was able to get signed up on a free prescription discount plan. The problem is that only 2 of my 6+ prescriptions are on it! So now I have to go sit with my MD and try and change meds to ones that are covered, oh joy! I have been without my supplements, muscle relaxers and Plaquenil for about a month now and it's really kicking my butt!

So there's the update, I am sick & tired and walking around boxes for the next 2 weeks! LOL....I have to find some humor in this or else I will cry!

Disability Doctors Appt.

Well today I had an appointment with a MD that Disability sent me to. I was really surprised that I only saw a doctor for approx. 15min. To be honest I have had pre-employment physicals that were more in depth. So, I am not sure if I should be worried about that or not?

I did feel validated though that my body did it's "normal" pops, cracks & swelling so the MD could see it! You know how it is sometimes....you feel crappy and are finally able to get into the doctor and than they don't see anything wrong with you, other than the norm! It makes me feel crazy when that happens!

I have to visit a psychologist for them as well in 2 weeks. Not quite sure what to expect, but will do my best to get 35yrs worth of life into a 15-30min appt. Do they really expect to be able to validate a diagnosis of someone they have not treated, in that short of time? Oh well, I will do whatever they think they need me to do.

On a positive side....I lost 12 pounds in 2 weeks! I have been tracking all of my food/calories and drinking more water. I also went into the MD c/o edema in my abdomen and having difficulty breathing. My lower legs/feet where so swollen and painful it was hard to walk. He put me on a diuretic and it is helping tremendously! They also did some tests to rule out Congestive Heart Failure & Kidneys problems. Luckily everything came back ok...thank you Jesus!

GUILT

I came across this today on my Spark People health website I use. This topic has been rearing it's ugly head again in my life. Guilt....the guilt I feel when people need help....the need to always say YES instead of NO....the guilt I feel when I take time for myself....I hope that those of my "YES" friends have a chance to read this. I am going to try and remember this and help me to say NO. My priorities right now are:
~My health and well being, physically & spiritually
~My family
~My friends

For so many years I have been afraid to say No...I have stretched myself thin and now I am paying the price with my health. Please take a moment and read this...Enjoy!

The right driving force~
Every guilt-driven "yes" means a "no" to something important in my life.
Guilt. It's a driving force behind much of our exhaustion. As Christian women, we say too many nos to the rhythms of rest and too many yeses to good things, like baking cupcakes, chaperoning car washes, shopping for a neighbor, or helping with the church's website. Every guilt-driven yes means a no to something important in my life. Every day holds 24 hours. As gifted as we are at multi-tasking, there are concrete limits to what can get done in any given day. The result? We routinely short-change the top priorities of our lives. We're irritable and impatient with those we love. We forfeit our need for sleep. We pass through many days oblivious to the presence of God.A remarkable story about guilt is tucked into the very first chapter of Mark. I missed its message for the first 40 years of my life, but it will be a driving force for the next 40. When Jesus visited Simon's home where his mother-in-law was sick in bed, Jesus healed her and the news spread quickly. That evening the whole town gathered at their door. Jesus ministered to each one late into the night.Waking early the next morning, Jesus slipped away to a quiet place to be alone with his Father. As the sun rose, a fresh batch of people gathered at the house. A group of disciples went looking for Jesus. When they finally found him, they announced, "Everyone is looking for you!" Can you hear their intent to instill guilt? The people waiting at the house for Jesus had legitimate needs and a real desire to meet him. Yet listen to Jesus' reply: "Let us go somewhere else …"
Refusing to be guilt-driven, Jesus chose to be Spirit-led. Jesus' holy yes to God meant an earthly no to real people with real needs. The lesson is clear—just because there's a need, doesn't mean I've been called to meet it. The next time an opportunity comes knocking on your door, consider these three suggestions.

Stop. Don't answer on the spot. Reply, "Let me get back to you." Then pray. Listen carefully. If you're living with little margin, any "yes" you say will demand a "no" to something, whether you want it to or not. What will that be? Face the truth.

Know your mission for the season of life you're now living. Name it. Claim it. Be incredibly sensitive and prayerful about any yes outside its domain.

Following Jesus' lead, remind yourself that saying "yes" or "no" requires direction from the Holy Spirit. It takes conviction, vision, and stamina, but it produces, joy, confidence, and a work of God that far exceeds the guilt-driven yeses we are often inclined to give.

Are you facing a decision that will place you on overload? Are you willing to pay the price? Are you willing to require your family to pay the price? We're asked to run hard, but not at the continual expense of rhythm. An earthly no may very well be the best yes you've said to God in a very long time.