My Chronic Life

I wanted to do this post before beginning my series on the stages of grief. This is something I want to share to show that life does indeed go on and does so successfully even with multiple chronic illnesses.

I have been blessed with a loving and caring family, friends and church family. Some of my friends are from the internet, either from blogging or from forums or groups.

Although I have had rough times with my health and of course still do, I know that I can call on these people for help. All I need to do is ask for a favor and do it without any feelings of guilt. When I’m not down and out I can try to return the favor. If I can’t exactly return it I can pray for them, or call them to lift their spirits if they’re feeling down, etc.

Having love in my life is one of the most important things I need. My babydolls are there for me and show me care and concern that money can’t buy. God has truly blessed me.

There may come a time in the progression of your illness when you are told that nothing else can be done, that your body is unable to fight any more and that there are no treatment options left.

When we face a life-threatening illness we may go through the stages of grief outlined in the famous book On Death and Dying by Elizabeth Kubler-Ross.

I will write about each stage in a single post in the days ahead. People who are diagnosed with a chronic illness may also go through these stages as this type of diagnosis causes great changes in their lives.

Some people may go into depression immediately. They will be so saddened to learn that they are hit by something unexpected. It can cause them to go out to purchase a burial policy because they feel that they want to give up and die.

My upcoming posts will focus on how to avoid this and reach acceptance of your illness with a positive attitude and even hopefully gratitude.

Many people with a chronic illness spend a lot of time at doctors’ offices, labs, hospitals and at home, sometimes in bed not feeling well. I often feel that my life is all about the medical stuff. When someone invites me to a party or lunch I have to check my calendar to see if I can fit it in with all of the blood tests, doctor visits, etc. It gets frustrating pretty fast.

It’s very important then to take time for just you - to do something you enjoy, to relax, to feel pampered. I try every day to set aside an hour when I can read my Bible and pray. This is my quiet time.

I get my hair cut once a month and enjoy the time with my hairdresser. We chat and laugh. She knows just how I like my hair so I can sit back and let take care of me without any worries. I always have her wash my hair because that’s so relaxing to me.

Once a month I try to get together with friends to go out to lunch. We call this our “Diner’s club”. It doesn’t have to be anything expensive, just a new place each time.

If you’re feeling too sick to get out of the house, why not set the mood there? If you like to relax with music, put some on and light some candles. Call in for a meal, even if it’s pizza (get some extra toppings!).

You don’t have to be extravagant, like buying yourself luxury watches or expensive purses every month. Frugal is good too.

Just know that you deserve some pampering. It will lift your spirits and help you to cope with all of the other issues more easily.

I absolutely love my house. I love the area where we live, our fenced in yard, the climate, our neighbors, etc. But when our youngest daughter moves out (OK she’s only 9 but I plan a lot) will it be worth it for my husband and I to live in a 3 bedroom home any more?

I’ve gone through this issue when my father passed away. My Mom refused to sell their house even though it was too big for her alone. The upkeep was too much for her to handle financially and mentally. She did finally sell her home when she got to the point of realizing that it was hurting her physically to keep it.

When we are faced with a chronic illness and we have obstacles in our living arrangements that can’t be changed, what do we do? For example, my cousin lives in a two story town house. She has Rheumatoid Arthritis that is not controlled with medication. Walking up and down the stairs is very difficult. Someone who is diagnosed with Chronic Obstructive Pulmonary Disease and is on Oxygen 24 hours may not want to continue to live in a home that is too spread out.

Most of the time you don’t have to move quickly. Use the time to weigh the pros and cons of moving. Talk to others with your diagnosis to see how they cope. If your insurance will cover it, a home visit from an Occupational or Physical Therapist may show you some options.

As for me and my husband we will most likely live in our home for at least 10 more years after our youngest is out of the house. That is if she stays in this area of course. But I know that there will be those issues popping up in the years to come.

We’ve discussed moving to a smaller home here, moving to other parts of Florida, and to look atBranson condos or other areas of the US. The good thing is that we’ve begun to speak about it.

Some people with chronic illnesses especially ones that are of the autoimmune type suffer from allergies. Common allergens found in the home are dust mites, pet dander, mold spores and cockroaches. Since our homes are often kept closed up in hot and cold weather we can be more susceptible to having allergic reactions and even asthma.

It is not easy to avoid these or other allergens in a home. Some things that can be done is to use protective coverings over mattresses and pillows, use HEPA filters in your air conditioning vents and vacuum cleaners and using proper ventilation techniques that help prevent moisture and mold. Using green products in your home for people that have chemical sensitivities is another way to keep your home healthy.

What are some things you do in your home to prevent your allergies from worsening?

I’ve been avoiding tear jerker movies and books for a long time. I’d much rather laugh than cry because when I laugh I feel good even if I’m having a terrible flare-up.

For those just not feeling well days, or the normal pain level days I try to laugh a lot. I make myself laugh and that shows how good my sense of humor is!

Hubby and I were talking the other day. What began as a serious conversation about the terrible real estate situation in our area turned into a laughing until I almost wet myself conversation.

After I mentioned that another home is up for foreclosure right around the corner, Hubby asked if I wanted to buy it. Here’s how the rest went:

Me: Sure we’ll use all the money we have in savings for the down payment. And we can use Peanut’s college fund for the mortgage.

Hubby: What will we do about the taxes and insurance?

Me: We’ll sell my medications on the street corner. People will see lots of prescription bottles. They won’t know what they’re for.

Hubby: Great! I’m sure that we can even save up for retirement on your meds. Maybe we can buy near a Branson private golf.

Me: I think we can own the golf course.

Find humor in something. There’s always someone who has it worse off than you.

Although I have Fibromyalgia, Myasthenia Gravis and Anemia and am so tired all the time, I often have trouble falling asleep or staying asleep. Sometimes it’s due to the chronic pain I have, sometimes it’s anxiety, sometimes I get my days and nights mixed up because I nap so frequently during the day and sometimes it’s that I’m over tired.

Some suggestions to help you sleep and possibly get a more restorative sleep are below:

• Avoid caffeine.
• Keep a regular sleep schedule
• Drink warm milk before sleeping
• Don’t eat a large meal before sleeping
• Keep your bed for sleeping or sex only. If you can’t fall asleep get out of bed, try to read or listen to some soft music. Don’t toss and turn.
• Be sure that your bed, mattress and pillows are comfortable. Don’t just choose any mattress because it’s on sale. Research. Try out the various types of platform beds, pillows including body pillows.
• Keep your bedroom dark and quiet
• Use relaxation techniques
• Check with your doctor or pharmacist to see if there are any medications that you take that may be keeping you awake
• Try to avoid long naps during the day
• If your bed partner snores or there is other noise that keeps you awake, try ear plugs

Hopefully these suggestions will help you in your goal to seek a good night’s sleep.

When we are easily fatigued, weak, unsteady on our feet or using an assistive device such as a wheelchair, walker or powerchair we need to be sure of keeping our homes safe.

1. Check for any type of tripping hazards such as loose throw rugs, electrical cords and items in walking areas. Remove these.
2. If you are weak and/or have an unsteady gait, don’t use the tub or shower when home alone. If that’s not possible, keep a cordless phone nearby in case of a fall. Install grab bars and raised commode seats if needed.
3. Be sure that the water temperature is not set too high to avoid scalding.
4. Use a shower seat and hose and don’t use bath oils or lotions in the shower or bath.
5. To save energy, place one foot in bathroom cabinets while leaning over Kohler sinks to do your washing up.
6. Have night lights available so that when waking at night walk ways are lit up.
7. Keep some important lists handy - the address and phone number of the home (you can forget things when you’re in a panic), information on medications and doctors’ phone numbers (sometimes called a File of Life), and contact information for family members.

It is important to a person’s well being to be able to remain at home when ill. A person can feel better about their life and may recover or not have flare ups as often if they are not in an unfamiliar environment.

If there’s a way for me to promote my favorite non-profit, DOUA I do it. I search the internet high and low for places to spread the word about this fine organization. For example on this post I was able to share information on DOUA. When I read about the latest Blog Battle Royale held by Izea I knew this was a great opportunity to not only support the Disabled Online Users Association but a chance to raise some very needed funds too.

My post on DOUA led to new members joining as students. That’s another goal of mine - to inform people who need the services of this non-profit. I also have a link to it on my blogrolls here and on my other blog. One of my goals for this blog is to be an advocate for people with disABILITIES. Providing this resource fits in perfectly with my blog’s theme.

DOUA is an organization for people with any type of disABILITY. It is totally free. The goal is to teach people to use the internet to earn money, especially by selling on eBay. I’ve been fortunate enough to find it at a time when I was at my lowest, feeling like I had lost my ability to do anything worthwhile. I was told I could no longer work and I was almost homebound.

The Disabled Online Users Association gave me the tools I needed to sell items on eBay and to gain back my self-confidence. In their training center I got support and made friends. I am now a mentor at DOUA. I am able to help others who are starting out. I also attempt to find volunteers and sponsors. So being a part of my first Blog Battle Royale can accomplish many things.

To make the mission of DOUA easy to understand, here’s a quote from Marjie Smith, Founder and Executive Director, “Our goal at DOUA is to help the differently-abled become self-sufficient and independent. If you’re disabled and would like to start your own online business, we can help.”

Ever since I was diagnosed with a rare disease, named of all things - Myasthenia Gravis - I’ve learned to do research. I started out at the library because that was the way I was used to doing it. Then as I realized the books were old and the information was outdated I began to use the internet to learn about this disease. When I did I was able to find out about the Myasthenia Gravis Foundation which then helped me to locate a specialist for this neuromuscular disease.

As my diagnoses increased I researched more on the internet. I learned what sites were from accurate medical authorities and what were sited trying to sell the latest cure-all. My neurologist suggested staying informed of new treatments, support groups online, and any new information online. I’m one of the lucky ones. Some people with chronic illnesses have doctors who dislike when their patients do any type of research.

Some suggestions for anyone doing medical research are to keep it in perspective and to look at it in the framework of as much legitimate information you can find. Do talk to your doctor about what you’ve found if you feel it is something helpful. Find some sites where people who have the same diagnosis meet and hear their opinions. Be careful with that too. Some people on social medical sites are there to sell something.

Keep your eyes open for snake oil salesmen. They may pitch the latest juice, plasma cutting, a vitamin or even some type of counseling that you can only get at one certain health resort.