Cactus for Boo-Boos

Dealing with the aches and pains from living with a chronic illness is overwhelming for anyone. I’ve been dealing with it every day since my daughter was in elementary school. Considering that she’s now a high school senior it’s a big deal. My illness has affected our quality of life in many ways. I’m always looking for ways to help with things, especially the swelling.

It has stopped me from enjoying the simplest things in life like going to a school function or being able to walk out the front door when a family out was scheduled. I’m always looking for a way to help deal with everything.  I’ve checked out a several drinks with a lot of vitamins and nutrients. Drinking cactus juice is an option for me since it helps with cleansing toxins from the body.  Nopalea is a cactus juice that’s been around for twelve years by people for helping with illness issues. 12 million bottles have been sold to help with the pain from inflammation from daily aches and pains. The goal of the company has been to help people feel healthier. Until reading more about the cactus juice I wouldn’t have considered drinking juice from the cactus.

Support During Pregnancy

New mothers have a lot more questions than experienced mothers. Setting up a support system is important especially for someone with a chronic illness. Being covered by nib health insurance is helpful. Find a trusted friend or relative is helpful. Asking the person to stay with you for a few days is helpful. One of the biggest fears when living with a chronic illness is passing it on to your child. Asking your doctor questions about the illness may give you some peace of mind. Everyone’s illness is different so there’s no way to predict the severity of the illness. Not all illnesses are passed along so there is a chance that your child will be health all of their life. Speaking to a specialist would have more understanding of genetics. Dr Ginni has a lot of resources online.

Chronic Illness and Depression

I wasn’t new to depression when I was diagnosed with lupus and fibromyalgia amongst other things. It was a total blow to my plans for life. The lupus totally rocked my world. My life was turned totally upside down by the daily pain I was feeling. I had lost total control of my body and  I couldn’t do  anything about it. I started to spiral out of control. My life became the disease not a part of my life. I looked in the mirror I saw lupus. I woke up I saw lupus. Lupus tore my life apart piece by piece.

It took me several years to find myself and realize that I was more than lupus. I was a human being with a condition. I had to learn to deal with all the ups and downs of lupus. It wasn’t easy, but I had to pull myself together. I’ve learned that planning ahead isn’t a guarantee of being able to do something. I’ve learn sometimes I can walk while other time I have to use my wheelchair. My days vary with my illnesses.

Dealing with the depression isn’t easy for me at all. I’ve learn that I have some control over what the depression does to me. I can tell when I’m spiraling into an abyss of depression. When I see and feel like I’m spiraling out I have to take a step back from life. I’ve learned to do things to bring about happy moments in my life. I’ve learned that sewing relaxes my mind and reading allows me to wander away from reality for a little while. Often I’ve put myself into the stories. The most valuable thing I’ve learned is to express my inner thoughts through my blog and in my many writings.

Yes, the diagnoses have turned me inside out, but I’ve learned to deal with them. I’ve had to adjust my goals in life, even if it’s not exactly what I’m waiting for in life. I try to make the best of things. The pain does overwhelm me at times, but I’ve learned that it will pass and this is what gets me past things.

The Many Faces of a Doctor’s Office

As you can imagine, I’ve spent a lot of time in a waiting room. I’ve seen such a variety of people in them. Some people are regulars in the doctor’s office. There are many ways you can tell regulars and first timers. Sometimes the doctors or staff knows the person by their name. Other times you see them with a tote bag full of goodies to pass the time. I’m the tote bag person most of time unless I leave it by the door. Time seems to pass quicker if you have something to do. One of the doctor’s offices I visit has sports and men’s health magazine. Sorry guys, I have a hard enough time I keeping up with my own health issues. I have a few magazine of my own that I’ll bring with me if I’m not in the middle of a good book.

Lately, I’ve not been allowed to be bored. I’ve learned the less time I take thinking about my illness the less time I spend depressed. I went through several years of that and still have some times where I want to take a large hammer to the lupus and fibromyalgia. But then I’m reminded that involves hitting me and I’ve had enough pain for a life time. So I just grin and bear it at times while other times I wish it away, but I’ve yet to put the perfect spell on it. Yeah, I’m off topic again.

I’ve seen hundreds of different faces in the waiting rooms I’ve visited. It’s not how anyone plans to spend their time, but eventually everyone is seen by a doctor. Remember most of you are seen by a doctor after birth and you will definitely be seen by one when you die. I would harp on the last topic cause most people don’t want to think about death. I know I don’t want to think about it. Each waiting room I’ve visited has different people. The nervous people usually look around a lot and you cannot get any eye contact. The “regulars” usually keep their head in a book or on the television. Then their are the people that are in a big hurry. Each time someone’s called they jump up a bit. It’s amazing how many different styles of people. Then there is the ones who go up to the staff and say I was first. Well that annoys the heck out of me. Doctors have multiple patients with different needs. Would you put an earache in front of a heart attack? You wouldn’t do that even if the child is in pain. I hate seeing kids in pain. My daughter and I have had enough earaches for a life time.
A dead giveaway of a new patient is someone with a clipboard in their lap with a drug company pens in their hands. At times they’ll look around like they are in another world, which is when they’re trying to remember their medical life history. I have a hard enough time remembered mine without being 90 and trying to get heads or tails of my complete medical history. Its times like that when it would be nice to have had a note taker for the last 90 years. But that’s not possible unless you change who’s your note taker.
I’m a regular at my doctor’s office and I love to take note of the many personalities in a doctor’s office.

What’s the most memorable person when you sat in a doctor’s office??????

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

Hummingbird's are Great to Watch

We’ve had a glass hummingbird feeder for a few years now. I really like watching them buzz like bees while they suck up the sugar water we’ve mixed together. We mix a half of a cup of sugar, water and red food dye together for perfect hummingbird food. The great thing about the hummingbird is you don’t have the messy bird seed all over the ground. This year we bought a new feeder for our visitors. Most of the hummingbirds we see are the ruby throated hummingbird. The remind me of a large bee because of the noise the wings make when they flap. A few times I’ve nearly got dive bombed by them. Sometimes it’s nice to watch these brilliant animals when you’re not feeling so hot from being sick. I’ve learned to enjoy the beauty of nature.

Being In Charge of My Medical Care

I keep a copy of my medical records for myself so I can take them to new doctors. This helps doctors to provide better medical care for me. It is important for all doctors to know about my medical conditions and medications. I keep a list of my medications in my purse in case I have one of my episodes when I can not speak or say words that make no sense. The first time I looked at my medical records it was like reading a foreign language. So I bought a Medical Dictionary so that I can better understand my medical records. Even though I have worked in the medical field I still find it hard to understand many of the words because so many of them are so alike. I can not imagine trying to understand my medical records without having a medical background. I have found some websites like Dr Foster Health to help me understand my medical records. If a Hospital Guides were available in my area it would help me find a hospital with a lower rate of MRSA. This is important because MRSA can be fatal and it’s an infection that’s hard to treat. Being a Knowledgeable patient is just as important as being a well educated Doctor. Knowing a little bit about the medical field goes a long way in understanding your treatment.

Business & the Economy

Starting a business today was a difficult decision for my friend. She was really worried about getting a loan because of the economy and her chronic illness. I was really quite surprised when she got a Business Loans to open her business selling clothing and accessories. She decided to open the business in her home so she would not have the over head of another place for her business. She put her business online and advertised like crazy. Her neighbors were her biggest customers. I was surprised to learn that she was taking credit cards at her home. She said a lot of people were trying to pay for items in her store with credit cards, but she did not take them at that time. Taking credit cards has improved her business profits.

A Good Nights Sleep

Living with chronic pain I have a lot of issues with sleep. I have many days where I can not fall asleep at all. I toss and turn many times and can not fall asleep. Other days I fall asleep, but I wake up feeling like I’ve been hit by a train or a semi some days. When I don not sleep well I pay for it the next day. I have TMJ as well which causes teeth grinding at night which causes my jaws to be out of place. At times it can be really painful. I am supposed to wear a splint, but it does not fit anymore and they are so expensive. My TMJ is caused by 2 car accidents in 2000. My jaw has never been the same since. I have thought about having a sleep study to see if there is something I can do to help with sleep. One of my biggest worries is having Sleep Apnea which causes you to stop breathing at times during the night.