Friday's Frustrations #1

Some of the biggest frustrations I have are with living with the limits lupus puts on me, it sucks and you have no idea how many times a day I wish it leave me alone and go back where it came from. I am so sick and tired of the pain every day, let alone the fatigue, yeah I know I’m ranting, but I’m not saying sorry for ranting.

My daughter and I got into an argument because she wants to rush through her school work to surf the internet and doesn’t want to ask me any questions. We did get it settled, but if she and I don’t get in an argument at least once a week something is wrong.

Some of them are better of not written here.

Filed under Lupus Rant, Meme's | Comments (3)

30 Things About My Illness

1. The illness I live with is: Lupus, Chronic Fatigue and Fibromyalgia

2. I was diagnosed with it in the year: 2001 (not totally sure.)

3. But I had symptoms since: I was a child

4. The biggest adjustment I’ve had to make is: having to stop working and the constant fatigue

5. Most people assume: I’m not telling the truth

6. The hardest part about mornings is: being so stiff and sore.

7. My favorite medical TV show is: ER and Strong Medicine (hard to choose just one.)

8. A gadget I couldn’t live without is: my rice heating pad.

9. The hardest part about nights is: tossing and turning in pain and the silence.

10. Each day I take 12 or more pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: have tried many things, but wish something would help.

12. If I had to choose between an invisible illness or visible I would choose: visible (but, it depends)

13. Regarding working and career: I miss it a lot and wish I could have it back.

14. People would be surprised to know: I’m not as strong as people think.

15. The hardest thing to accept about my new reality has been: not being the kind of Mom I dreamed of being.

16. Something I never thought I could do with my illness that I did was: don’t know

17. The commercials about my illness: make me cringe, Lyrica over and over….. Like I need reminder of the pain.

18. Something I really miss doing since I was diagnosed is: being able to run errands without loss of energy.

19. It was really hard to have to give up: my memory not being what it used to be.

20. A new hobby I have taken up since my diagnosis is: writing

21. If I could have one day of feeling normal again I would: visit an amusement park.

22. My illness has taught me: to slow down.

23. Want to know a secret? One thing people say that gets under my skin is: people not acknowledging my sickness and being treated like I’m broken.

24. But I love it when people: listen and try to understand what I’m going through.

25. My favorite motto, scripture, quote that gets me through tough times is: the serenity prayer.

26. When someone is diagnosed I’d like to tell them: find out as much as you can about the illness and don’t take doctors word as gospel truth.

27. Something that has surprised me about living with an illness is: how frustrating it really is to be in pain day and night.

28. The nicest thing someone did for me when I wasn’t feeling well was: helping me on bad days.

29. I’m involved with Invisible Illness Week because: I want to speak awareness of chronic illnesses

30. The fact that you read this list makes me feel: good and glad I could share my story.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

Tick… Tock… Waiting…..

Today, were waiting for a chest freezer to arrive and it’s kind of like waiting for a watched pot to boil. The companies give you a 4 hour window for delivery and well it’s now 5 minutes before the 4 hour window ends and it’s still not here. The worst part is I’m really worn out today so I’m fighting just to stay awake. I will be so glad when Mr. Lowe delivery man arrives with my freezer. Tick Tock…. Tick Tock……. So, I’m off to waiting again….

A New Place to Lay My Head Please

Trying to get a goods night sleep with my bed is next to impossible. I’m tired of the feeling so wore out before I get out of bed. Some days, I don’t want to get out of bed, but the pain and fatigue give me no choice. I usually get something to eat so I can take my pain medication. Taking pain medication on an empty stomach upsets my stomach. I would love to purchase a memory foam mattresses and a new bed frame. I’ve heard a lot about the benefits of those mattresses for aches and pains from friends online. At this point anything would be worth helping with the pain. When I purchase a new mattress I would like to purchase a bed with storage underneath it. I really like the Ottoman Storage beds from time 4 sleep. The bed lifts up so you can store sheets, blankets or even shoes away for seasonal changes. It would free up a lot of space in my linen closet, which is not much room. The bed comes in at least 5 different colors and I don’t know which color to choose. I would purchase the double sized bed. It would probably be wise to pick a color that goes with my dressers. It will take me a while to save the money for a new bed, but it would be such a relief from my pain.

I Hate Writers Block

I don’t seem to be able to find the words I need to write today. I seem to be having some kind of writers block and this is not fun. I hope it don’t last long because I love to write. Writing has giving me a way to release everything while dealing with lupus and life in general. In many ways it’s been my way out. It helps me leave the disease behind for a few moments I guess it just one of those days when I just can not write many words. I Just Hate Writers Block especially when it’s Your Own Therapy. Well I can only hope it passes soon. Some of it’s probably my pure exhaustion of living with lupus and chronic fatigue. I hate having very little energy.

Finding Cheaper Ink for My Printer

A week ago I had to purchase printer ink again. Since I started homeschooling my daughter we go through more ink. My printer is a Brother so I have to purchase multiple ink cartridges. I have 4 ink cartridges for my printer so it can be a pain buying them, but in the end it saves me a few bucks. I have been looking for a way to save money on the ink cartridges. We use a lot of black ink, so you guessed it I have to purchase more of that ink. Trying to save a few bucks on ink is difficult for me. In my area there is only one place to purchase the ink. So I’m always looking for a place to save money on ink online. My other printer uses HP Printer Ink, but I use the brother more often. The HP doesn’t have a flat scanner so I can scan images. In this economy it’s important to find ways to save money. I’ve learned to be a big time comparison shopper since having to pinch so many pennies. One thing I can’t go without is ink for my printer because it would cost me more money to print at the local office supply store. I don’t have the energy to go there either. The energy I do have can be better used then waiting for a copy machine to work. So I’ve decided to check out some places online to purchase my ink cartridges next time.

How Do You Exercise with Chronic Illness ?

Exercising is something I find very painful. I end up in more pain then I started out with. I wish there was some kind of exercise I could do that would help with the pain levels and help with the horrible affects of  the fatigue. Lately, my fatigue has been so bad. I just don’t know what to do.

So, I’m asking you chronic illness survivors, What do you do for exercise or do you not exercise?

Treating the Symptoms of Lupus

Since I began symptoms of lupus I am constantly in search of something to help with my symptoms. A lot of issues with lupus are my lack of energy along with pain. When you live with a chronic illness you get desperate to find something to help with your symptoms. I’ve tried a variety of dietary supplements to help with the symptoms. I’ve taken folic acid, super vitamin B complex and a few I can’t remember at the moment. One dietary supplement I read about was Liquid Colloidal Silver. It is a dietary supplement that’s been used for years to help with fatigue, fibromyalgia, acne, asthma and many other health conditions. Colloidal Silver is another supplement that I would consider using, as many of traditional medications have done nothing for my energy levels. Just a little bit of energy would be a blessing for me. Today I went to the store and I am so tired just from that trip. As I continue to research True Colloidal Silver and I’m seeing the benefits. While dealing with my health conditions I check out every way to help me deal with all my chronic illnesses. I’m an active participant in finding different treatments for my health care. If it wasn’t for my perseverance about explaining my symptoms to a doctor I would not have received the necessary treatment for my health.

The Word of the Week is Frustration

The word of the week is frustration. Frustration is something I live with each and every day. Lupus kind of makes things go this way. . There are days where the only thing that keeps me going is my family. It’s the smiling faces of my family or the silly things that my dogs do. My male dog Mason was barking at his retractable leash one day. We had put the leash on the ground pole of our porch and every time he moved it made a whine noise. It was really funny watching him bark at the leash for no reason. You see he tries to act like he is tough. In reality he is just a big baby.

Sometimes the frustration can be more than I can bear. It makes me want to lose my mind sometimes. It’s the wishing that I had my energy back and my life back. Once upon a time I worked as a CNA. Ya, it was a dirty job, but it was a job that I really loved. I was able to take care of others and it made me feel useful. I was doing for them what I would want to do for myself. It’s hard to be in there shoes in some aspects. It upsets me when people complain about there jobs because really they don’t know what they really do have. So my advice to all you that hate your jobs either get yourself a different job or be quiet. I’m sorry I am so blunt about it, but I feel very strong about it.  

What is frustrating about living with a chronic illness to you? Share your story here. I will chose my favorite and write a post linking that persons blog in my post entry. So Share your frustrations here….

Dear Mr Energy Monster

You entered my life over 7 years ago. You took away my youthful energy. You made simple things like cooking a meal difficult. They feel more like I’m running a marathon. You can leave anytime. I did not ask for you, nor did my family. You can leave me and find another home and that does not include me or anyone else. I have asked myself over and over why you came to visit me. I still don’t have the, answer to that question and if you would kindly come forward I have a few things to tell you. You’ve invaded my life like the bad sinus headache and that’s saying it mildly. I will be glad to release you anytime you can take your no good butt and leave me alone.

Not Sincerely Yours,

Chronic Chick