Invisible Illness CFIDS/FMS

Just A Short Note

2009-10-19T22:58:00.003-05:00

Hello Everybody,

I just wanted to drop a short note because I am truly fatigued. I am truly struggling with this phase of my fatigue and pain. I need to focus on taking care of myself however, I have too many loved ones that need me and require my time and energy. I was able to sign up on twitter today:)

Please pray that I will be able to sleep in tomorrow and fell better when I wake up. I need to get back on my supplements soon. Perhaps a miracle will come my way.

Keeping the faith:) I just wanted to say hello.

I hope and pray everyone is experiencing joy in their lives and that everyone has had a pain and fatigue free day.

My Grandchildren with Pumpkins

2009-10-18T15:08:00.003-05:00

Hello Everyone,

Here are some individual pictures of my grandchildren, Lorena and Alessandra. They will be 2 years old on October 31, 2009.

I hope and pray everyone has a pain and fatigue free day.

Sharing Photos - Family

2009-10-18T14:17:00.003-05:00

Hello Everybody,

Here is a recent picture of my grandchildren, daugther-in-law and middle son at the pumpkin patch.

A Lovely Award

2009-10-18T11:32:00.004-05:00

Hello Everybody,

I have just received an award from a special blogger friend, timethief (Latief), always willing to help anyone. Surging the net, reading and writing, works from home, whose goal is to be a good blogger. He always shares information, loves blogwalking and leaves comments. He created an award meant for people Meme and is always willing to visit your blog and help out. So check out this meme award:

A Lovely Award

I thank timethief and I am adding additional people. Please read their blogs, they are interesting and gifted people.

Here are the rules of the “One Lovely Blog Award”:

1. Accept the award.
2. Post it (the image) on your blog together with the name of the person who has granted the award, and his or her blog link.
3. Pass the award to other blogs that you’ve newly discovered. Remember to contact the bloggers to let them know they have been chosen for this award.

To spread the love to these terrific bloggers whose blogs are new additions to my reading list. Please take part in the meme and please also visit each others’ blogs.

1. Living Chronically – Artist. Wife. Mom. Slightly rebellious in a non-threatening way. Dog lover. Cat lover. Housework hater. Coffee, chocolate, wine, shoe, and purse addict. Thrifty. Closet writer. Gourmet wanna-be, but oh so bad - and not in a good way.

2. Let's Get Better – These stories are meant to be motivational. By use of analogies. In the first story is a made up analogy about a horse called "time" and in the second story a true analogy about a "Smörgåsbord" restaurant.

3. A StellarLife - Living a life with Multiple Sclerosis and all the rest. This blog will include my views on current events, disability issues, entertainment and silliness, politics, health issues, and I am sure to offend some; but the celebration of diversity is my main goal.

4. Abba's way – Mary333; I am a committed Catholic, a wife and the mother of one.I am pro-life and love praying the mercy chaplet and the rosary. My favorite saints are St. Teresa of Avila, St.Faustina and St. Padre Pio.

5. theBluesman – Who says that life has to be so serious...take it easy. An individual with a loving and compassionate heart and has so much to share.

6. The Life and Times of La Jenno - 26 years old. Daring. Disenchanted. Different. Trying to live in a friendlier yet more honest world. There is sometimes no larger dilemma.

7. Fibromyalgia Is Not My Life - Living and coping with the strange symptoms and chronic pain associated with Fibromyalgia, Irritable Bowel Syndrome (IBS), Temporomandibular Joint Disorder (TMJ) and Polycystic Ovary Syndrome (PCOS). Discussions on medications, alternative medicine, diet and other therapies.

8. THE MINDS OF BEADS - Shares artistic beauty; Grandpa made a dollhouse, I was hooked on making minatures from then on. A fascination for the hunt of vintage and antiques grew. Thrift stores, antique malls, that is my kind of shopping. This grew until I became an Antique Dealer. What also grew was my passion to create and open my first booth in a craft mall.

9. Tea Art Blog – Discovering Tea of Art is an well rewarding adventure hobby. Build your interest in it and you will enjoy the fruit at the later stage. All the best to you.

10. Alyson's CFIDS Blog – 30 years old, and I have had Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) -- also known as Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (ME) -- for my entire adult life.

There are so many more worth mentioning and I wish I could list everyone. I am just too fatigued to continue. Please don't forget to check out timethief

I hope and pray everyone has a pain and fatigue free day. My thoughts are with everyone.

Focus on Accomplishments

2009-10-15T12:24:00.003-05:00

Hello Everyone,

What a week it has been. Jerry lost his wallet and we have no idea where. He did not notice it until about three days after we had been out with a friend to dinner. No telling where it is. Oh well, I am ordering new a Medicare card, his license (he can no longer drive) or id. Thank goodness I never let him carry much money because this has happened more than 2-3 times. Poor baby, he feels badly, but what can we do? I will not stress over this because I don't have enough energy to do it. Stress is not good for our family environment.

Jerry almost ended up in the hospital on Monday fortunately, we went to see the doctor and he figured out a different means of administering the only IV medication that helps Jerry's breathing issues. Usually they only administer this medication in the hospital, there is a place called Austin Infusion Center where they use the IV's. The only problem was I had to take him to two places on Monday, he had to have the medication on Tuesday (twice) and he had two other appointments this week. We found out he had to have nasal surgery this week. So, I have to plan out budgeting money for surgery. You have to pay upfront, no payments arrangements.

I have not had much sleep this week and have had to drive around more than usual. I was so fatigued on Tuesday, I stayed in the car while Jerry went in for his dose of medication.

Lets get down to what I wanted to post about. Due to our chronic illness and disabilities we are unable to accomplish certain tasks or complete the number of chores we want to. We must focus on what we have been able to accomplish. While I have not been able to take care of certain chores, I have completed some, so I feel good about it. I have been able to drag myself out of bed, take Jerry to his appointments and somehow managed to visit my Mom during the process. That is great and I thank my Lord for giving me the strength to walk, drive and support my family.

I am ashamed of myself for not recognizing I can walk unlike some of my other Blogger friends. Shame on me. I pray to God for forgiveness.

Do yourself a favor and focus on the positive aspects of your life and recognize how blessed you are. Don't fall into that trap of not noticing others with much more pain.

Thinking of everyone and I hope and pray everyone has had a pain and fatigue free week.

Reflecting on My Goals

2009-10-11T17:34:00.004-05:00

Hello Everyone,

My goal has been to share my experience, tools and how I deal with my ME/CFS. I am trying to remain positive everyday and take control of my health. God has chosen us to take on this challenge and it is up to us to make peace with it and then transcend all our emotions and feelings with a full understanding of what his plan is. I believe he wanted me to share my own experience, share tools, and information. I have met so many people dealing with this health challenge, many are alone.

While I enjoyed my career and found it to be a great learning experience, I wasn’t doing what I originally wanted to do. So, maybe this is God’s way of granting me the opportunity to help others. Here are some questions to ask yourself and I would like others to give me feedback.

1). Has this illness changed my personality? Have my priorities in life changed?

2). I know I had to make lifestyle changes? Would they have happened for another reason? Perhaps due to age, wisdom or life experiences?

3). Am I accepting my path in life?

4). The choice is mine, am I embracing this illness and learning to think about all the other great miracles in my life? I do have many things to be grateful for, so am I focusing on those things? If not? Why not?

It helps me to ask myself these questions, it reminds me not to feel sorry for myself and focus on what I have accomplished in the past and present. Remind myself of the blessings in my life. I don't know if I would have ever been interested in blogging or reading other sites, perhaps this illness had lead me to this wonderful path of making new friends from all over the world.

I hope and pray people that suffer from chronic illnesses are able to cope with everyday challenges. I have been given the opportunity to learn about how others handle their challenge in life and the many gifts people have to offer.

I want all of you to know I am grateful for having this wonderful opportunity of meeting you and reading your personal posts, or viewing your photo's, art, and so much more.

I ask God to forgive me when I am weak and to give me the strength to continue to focus on the positive aspects of my life.

I hope and pray everyone has a pain and fatigue free day.

Still Trying to Find Ways to Earn Money

2009-10-11T14:35:00.004-05:00

Hello Everyone,

I have been surfing blog sites and reading interesting posts. I found one where I might be able to earn money. Here is what the other post noted:

One of the fast way to earn money is by doing offers. I would recommend sticking to one program. Most of the places that have you sign up for free offers are all the same. You can actually only sign up for the offer once. You will get to your payouts a lot faster this way. This individual said "I have made some money from this site, and its been around for a lot time."

This individual went on to note their site. So I decided I might try this out. If you are interested, here is my site id so I can get credit for your free share:

CLICK HERE

As long as it doesn't cost me any money, I will try it out. I know you have to spend money to make money. It is hard to do that when you have no money, right? Wish me luck.

I pray and hope everyone is having a pain and fatigue free day. Soft Hugs to everyone.

The Past Two Days

2009-10-11T00:28:00.002-05:00

Hello Everyone,

The past two days have been tough. The weather changed again and it is cooler outside. Rain is not my friend, it is my lawns friend, but not mine. It is not very cool, but any cool weather does not agree with my body. It has been difficult to get up and get going. I had to go pick up a script of medication to help me stay alert. Since I am unable to afford the Concerta ER I am taking Methylin 10MG. I take two in the morning with my pain medication to help me wake up. I am pretty useless without it. I am to take two more in the afternoon to keep me awake. However, my memory is not as good as it used to be, so I forget and later realize why I am not alert. I know it sounds crazy, but that is what my life is like.

The Methylin is not doing the job and I am looking forward to January 2010 when my new deductible on medication starts and I have not met my donut hole. Does anyone know what I am talking about when I mention donut hole? Your Medicare Part D prescription covers only so much of the medication and once you have met that limit, you have to pay a higher price. Thank goodness, my pain medication and this new medication only cost $16.00 because they are generic. Starting in January I pay $70.00 for Concerta versus over $200.00 a month. My doctor will not prescribe Adderall or anything like it that comes in generic form. Darn. Oh well, I am adjusting to the new medications.

I am experiencing Fibro Fog and caught myself unable to remember words. It is so frustrating when you forget simple things. I also slur my words on occasion and I do not even notice it. When I am speaking, it sounds clear to me however, my family will let me know they cannot understand me. This morning I was trying to use the word taking and said smaking. Sadly enough I knew I was doing it. I will not allow my family to let me talk on the telephone or do anything of importance for at least a couple of hours after I wake up. Why? The reason is I cannot even recall my conversations with people. I have asked my family not to ask me anything of importance until I am more alert. Please do not feel sorry for me, just pray I am not taken advantage of! Just kidding, I know my family would not take advantage of my inability to remember important conversations. What worries me is when someone calls and insist upon speaking to me. That has happened in the past, but I put a stop to that.

I believe my journey in life is a bit comical and leaves a lot of room for humor. I guess what I am trying to tell those of you that suffer from Fibro Fog, do not let this get you down. Perhaps we are even forgetting some of our pain in the process. I believe the journey we are experiencing makes us stronger. If we figure out our shortcomings, we can find ways around them, which in a way encourages us to keep our mental health in check. This is why it is so important to keep a journal. Trust me, I have gone back to read some of my old journals and do not even remember some of my most painful experiences. Things happen for a reason and it is our job to make the best of what is happening or change.

My tip is do not be hard on yourself, so what if you do not remember, and write down what you think you have to remember. That is if you can remember what you wanted to write down! Just a joke, keep your sense of humor. I hope this post is not confusing. If so, my apologies.

My thoughts are with all of you and I pray and hope you had a pain and fatigue free day.

Viv

Oh What a Day

2009-10-08T21:11:00.004-05:00

Hello Everyone,

Oh What a Day (sounds like a song), Jerry had another appointment so poor baby had to work hard at waking me up today. He started at 5:30 AM and I was ready by 8:00 AM. I truly feel sorry for him, he has to give me my medications and give me at least an hour to try to wake up. I am very spoiled. He sets up by bath water for me. Shameful! I appreciate it so very much:)

Anyway, I had to get up early so I could borrow my son's car. I have to save enough money and get my car fixed. My poor son has to get up early so he can come by our home and pick us up to drop him off. I am blessed to have such a good son, he does not mind helping us out and lending his car out to his crazy Mom who is not coherent. Scary, I know.

I was bad girl last night and stayed up late catching up on Fringe episodes. I knew I had to get up early and I have trouble falling asleep. Sometimes I am my worst enemy. I should be more considerate of Jerry (hubby). He just deals with it. I believe I married my soul mate. He is my best friend, my love and he loves me for who I am. Amazing.

Oh back to my "Oh What a Day,” the words reminded me of music. Music can be very healing. When you feel so alone, turn on that music and dance, dance, dance. Smile, Smile, Smile, and dance like nobody is watching you. Honestly, it is a mood booster. Try it. Make up a song...Oh What a Day, I can make it my day, I can feel good today, just make it my day, Oh what a day. Okay, so I wasn't meant to be a songwriter. Hee Hee Perhaps I made you smile? Come on, you can do it ...SMILE, SMILE, DANCE, COMPOSE A SONG. I know I sound crazy. Crazy makes me happy. Try it you will like it.

I am way out of it; I think I will go to bed now.

I am sorry I have no tips. Actually, I did have one tip. Listen to music. It can help enhance your mood. Please make sure it is happy music.

I am thinking about everyone and praying that you have had a pain and fatigue free day.

God Bless,

Viv

Remember to Update Your Medication List

2009-10-07T19:55:00.004-05:00

Hello Everybody,

I am feeling so much better these days and I have been working on staying positive and motivated. I thought I would remind everyone to update their medication list. If you have a notebook where you can divide sections by topic, one section should include medications taken, doctors, emergency contacts. etc.

What information is the best?

- The name of the medicine and what it is suppose to do.
- How and when to take it and for how long.
- What foods, beverages, other medicines and activities to avoid while taking the medicine.
- Potential side effects and what to do if they occur.
- What to do if you miss a dose.
- Proper storage instructions.
- Update your calendar to include when prescriptions should be filled.
- Name, address and phone number to pharmacy.

Special Notes:

- Allergies
- Medications you are allergic to
- Immunizations (current list)
- Emergency Contact Information

Add a calendar section for appointments and prescription refills. A calendar can help when you are on a budget and have to make sure you have money available to refill scripts. Good luck and please try my tips.

Always remember that Pharmacists not only prepare your medication, they are there to answer questions you may have. They can also offer computerized records of all your purchases for insurance or income tax purposes. Don't be shy, ask for the list.

An updated journal will help you and your family stay informed. I know it isn't easy, but that extra effort will allow you to start taking control of your health.

I hope and pray everyone has a pain and fatigue free day.

What's New?

2009-10-04T22:53:00.004-05:00

Hello Everyone!

I have been so busy taking Mom to the doctor, Jerry to the doctor, checking in on my friends, and visiting my beautiful twin grandchildren (Lorena and Alessandra). I will have to add a picture of them here for you to see. I need a recent photo, so it will come soon.

I just visited a beautiful site with a beautiful song that has to be at the top of my favorite songs. I love all kinds of music, but this song just calmed me down and made me feel so good. The words are what I believe people are! We all have so much to share and experience.

Here is the link to site of my newest friend connection and song: Smile

I will write soon, just wanted to share that song. I am feeling a bit better and working on listening to that inside voice that is just whispering for now. Smile Smile:)

My motivational voice came out!

2009-09-22T12:55:00.003-05:00

Hello Everyone,

After resting consistently my little motivational voice attempted to get me going, I woke up at 7:30 a.m. in extreme pain and took my medications. I decided to lie back down and try to sleep off the pain. I did fall sleep in until 9:30 a.m.

As you know research notes, excessive periods of prolonged rest can cause deconditioning and may worsen symptoms of chronic fatigue syndrome. Therefore, gradual introduction of regular stretching exercises, walking, swimming or any other type of activity at your own pace can help reduce fatigue and improve physical function. I do not believe in jumping into an intensive exercise program. It is very difficult to move when due to the pain, let alone the fatigue. However, we have to start somewhere.

Therefore, my little voice convinced me to gently complete my stretching (although it was painful), call and check on my hubby and update my blog.

I have been lazy about making sure I breathe correctly, so my breathing post has reminded me to schedule in time for breathing exercises. This is what I plan on doing after this post:

- take a long hot bath
- lay down and complete some diaphragmatic breathing exercises
- use spine towels (I believe I posted how to use spine towels on my site)
- slowly get up and separate my laundry, perhaps wash one load.

I promised my son I would spend time catching up on our favorite shows. I am looking forward to Heroes, Castle, and Doll House. I will probably spend the day visiting with him and watching favorite television shows. Who knows what will happen the rest of the day. I know I have to schedule time for meals; we tend to have a good breakfast and nibble the rest of the day. Drinking lots of water is important and I sometimes have a tendency to limit my liquids. Fortunately, my family watches me closely and reminds me to drink more often (water, not alcohol, water, hee hee).

Oh, I will probably throw in some posture scans since I plan to watch television and certainly will use my posture supports when sitting, especially arm supports. Do not forget about using those pillows to support your arms, back, neck, knees, legs, and feet. It feels so good.

I will be thinking about all of you and hope you go back and read some of my tips on posture scans, stabilization, spine towels, and the use of cold and hot therapy pads.

I hope and pray your little voice works on motivating you to take the time and schedule in some simple stretches, posture scans , update your journal and pace.:) Remember we can take control of our health and take small steps towards increasing our strength in faith, hope, and God.

Benefits of Diaphragm Breathing

2009-09-22T11:50:00.004-05:00

Hello Everyone,

Breathing in special ways, such as diaphragm breathing, has three important benefits:

1. It relaxes all the muscles of the chest and abdomen. During times of high stress or pain, these muscles will tighten up and restrict normal body function. Diaphragm breathing can keep these chest and abdominal muscles from tightening and cramping and allow them to relax and loosen.

2. Diaphragm breathing will increase the amount of oxygen that taken into the body. During stress or pain, an individual's breathing will “automatically” become more rapid and shallow. This disruption in the normal breathing pattern often lowers the amount of oxygen you take in, making your feel light-headed and sometimes nauseous. Diaphragm breathing counters this process and actually allows you to increase your oxygen intake.

3. Focusing on breathing does not allow you to focus on noxious events. Human beings can only think of one thing at a time. When you are in pain or under a great deal of stress and tension, you can do two things:

a. Concentrate on how bad you feel or how anxious you are or how bad off things are which make the situation worse, or

b. You can short circuit this vicious cycle and concentrate on something that is physically good for you and that competes with focusing on the painful situation. This is what diaphragm breathing is all about.

Therefore, anyone can learn to get a tremendous amount of control over his or her body’s natural stress response just by breathing correctly. In addition, diaphragm breathing can be done anywhere, at any time. You can be driving, in bed, while at work and no one knows you are doing it.

There are actually common illnesses that are correlated with unbalanced, under-developed, dysfunctional breathing. Breathing affects the following:

-respiratory system
-nervous system
-circulatory system
-digestive system
-endocrine system
-urinary system
-movement
-skin
-and most importantly...mind, body and spirit

Oxygen enhances the body's ability to rebuild itself, detoxify blood, and strengthen the immune system. Oxygen will heighten your concentration, memory and alertness. It is so easy to forget the simple things we can do to help ourselves.

Click on this link to view how to breathe properly: Diaphragmatic Breathing

I hope and pray this session on breathing helps you alleviate fatigue and pain.

Try setting goals and pacing

2009-09-22T11:37:00.000-05:00

Set daily goals first, then weekly, monthly and three month goals:

Make sure you set small and realistic goals.

1). Today I would like to:

_________________________________________________

2). What factors (within my control) make it hard for me to reach this goal?

__________________________________________________

3). What can help me reach this goal? Who can help me reach this goal?

__________________________________________________

4). To improve my pacing and get enough rest, I will do what?

__________________________________________________

Note: Use this worksheet or log to set goals to rest and pace yourself.

I hope and pray this log/worksheet will help someone today.

Fibro Viv

A water leak, now what?

2009-09-21T21:06:00.003-05:00

Hello Everyone,

I had a great day of sleep on Saturday and was able to wake up on Sunday without too much trouble. I am off the Concerta ER because it is too expensive and I have met my donut hole. The new cheaper medication does not seem to be doing the job of keeping me alert.

Jerry had another rough night and could hardly breathe. We called the doctor and I ended up having to drop him off at the emergency room hospital before I picked up my son.

As we stepped out, we noticed a puddle of water in close to the truck. I thought the water had been left on, oh no, it was a water leak. That was the least of my problems; I had to get Jerry to the hospital. Anyway, I ended up dropping Jerry off, picking up my son and he was so kind as to fix the leak. I am blessed in so many ways. My son offered to take care of the leak as soon as he noticed it. Poor baby ended up staying over until 2:30 PM because he had to run back and forth to Home Depot for parts.

So my hubby is in the hospital, my son fixed my water leak and as soon as he went home, I went straight to bed. I am physically and mentally exhausted. I am not fighting this exhaustion and I am going to take care of myself. The doctor's and nurses can take care of Jerry; it is time for me to rest.

Since I am trying to catch up on my posting, I will go ahead and let you know what I did today, Sunday. Absolutely nothing, I slept in and then I decided to read my emails and post. I did take time out to cook one meal and visit with Jerry on the telephone. Right after this post, I am going back to bed. My mind and body need this long overdue rest. That motivational voice is not coming out today either!

We know when to say "Absolutely NO" to everything and everyone. I am going to allow my body to heal. My goal is to wake up whenever, plan to complete maybe two chores and rest. I need to rest so that I can take my Mom to the doctor on Thursday for a final test. My younger son cleaned up the living, dining, and kitchen area (floors too), so I just have to clean my room and take care of laundry. I am behind on the laundry so I will enlist some help.

I know I promised some information on breathing. I will try to post that information in the next day or so. Meanwhile, do listen to your body, rest and know when to say "absolutely no."

Thinking, hoping and praying you are all having better days filled with love and compassion.

P.S. I know my writing probably isn't very clear, forgive me. I will edit new posts. Later!:)

Saturday Morning Oh No

2009-09-21T20:47:00.003-05:00

Hello Everyone,

Well, Saturday morning came and I was to wake up early enough to go pick up my son at work. The usual routine, Jerry gives me my medications early, I take a hot bath, get dressed and go back to bed. This morning was a trip! Jerry was having difficulty breathing and could not make hot oatmeal for me (it helps wake me up). However, I woke up, took a bath and went back to bed. I could hear his voice in the background as I tried to go back to sleep. My eyes were so heavy, my body was limp but I could hear Jerry...wake up honey, wake up, we have to go pick Tad up. Yet, I could not pick my body up, when finally he said "I will pick him up," I jumped out of bed because he can no longer drive. I know he feels badly about not being able to help out with the driving. He knows what makes me react, and that remark certainly worked. As I walk away from my bed, the telephone rings, it is Tad and he has to work a double shift. No need to pick him up! Oh yeah, I quickly jumped back into bed, did not even bother to get comfortable. My son is a firefighter and sometimes has to work double shifts. Today's double shift was a blessing for me.

I decided to get up and get some comfortable clothes on (pajamas) and slept until 6:30 PM. Woke up long enough to tell everyone I loved them, ate a small meal and went back to bed.

This happens to be one of the days my motivational self stayed asleep. I did not hear that voice make one sound. Hee hee

I hope and pray you had a restful day free of fatigue and pain.

Friday...a long day

2009-09-21T14:17:00.006-05:00

Hello Everyone,

I borrowed one of my sons truck so I could take Mom to her appointments on Friday. This meant he had to come over early so I could drop him off at work. I dropped him off, picked up Jerry's nasal sprays and proceed to pick Mom up prior to 9:30 AM. She had to have a fasting blood test in the morning. Jerry came along even though he felt horrible. We stopped to pick up food after the test and proceeded to drop Jerry off at home. We had an hour to rest, then back from Southeast Austin to Southwest Austin for another test. She had two tests this afternoon, she felt so weak and in pain we had to rest at a picnic table by the doctor's office to rest. After all getting in and out of a truck for a short person is a chore. I was beat and did not want to make my last stop. I had to pick up a few items at Walmart. I almost kept driving, but decided to just do it.

Do you ever just realize you are pushing to motivate yourself and the other voice fights back! I know I sound crazy, I go back and forth and finally make myself do it! I did it and made a final stop to pick up a meal. I wasn't up to cooking. The motivation can only take you so far! I made it home by 7:00 PM, what a day! My right knee was hurting because I am not used to driving for long periods of time. You can truly tell a difference when you get back to driving and running errands. Pacing is important.

I went straight to bed because I knew I would have to wake up early the next morning to pick up my son at work. The reason I am sharing my day with you is so that you can examine your day and feelings. We can motivate ourselves and are capable of much more than we think.

Do me a favor for just one day...write down everything you do and what it took to get it done. You will amaze yourself or not. Believe me, I have had those "or not" days too. Heehee

Thinking of you, praying you had a fatigue and pain free day!

September 16ths Activities

2009-09-20T11:14:00.006-05:00

Hello Everyone!

Sorry I have not posted. I am catching up from a very busy week. Wednesday I started my day reviewing bills trying to decide what has to be paid and budgeting in medications, gasoline and groceries. The house and utilities always come first. Then I move on to medical bills and leaving money for medications and groceries.

Jerry's newest doctor was located at Austin's Captial Otolaryngology, a ear, nose and throat doctor. He used to suffer from polyps and his Pulmonary doctor suggested he go visit this doctor. His pulmonary doctor is trying everything and anything. I give him credit for that.

Anyway, this group of doctors are dedicated to giving their patients individualized attention and are very compassionate. I guarantee you, he listened, examined and performed a CT scan. You know how hard it is to find a doctor who actually spends more than 5 minutes with you? Dr. Slaughter examined Jerry, asked questions, reviewed his history, ran the scan and gave us his thoughts. He gave us a chance to ask questions and offered suggestions prior to even suggesting surgery. Thank goodness. Some patients with nasal and sinus troubles often don’t realize that their symptoms are actually caused by allergies. We however, know that we all suffer from allergies. I truly believe we made a mistake moving to Austin and should have stayed in Phoenix, Arizona. Family brought us back and we will stay here for as long as we can. My Mother is a very important part of our lives and now we have grandchildren, so we are here for now. Good or bad we are working our way as well as we can.

Back to nasal issues, there are some patients who have structural problems such as a deviated septum, nasal polyps, old nasal fractures or internal deformities. There are some people that have nasal tumors. Jerry has had nasal polyps previously and he has an infection. We need to work on clearing him up. An ENT can determine the precise cause of your symptoms and provide the best treatment. The doctor prescribed a combination of customized nasal sprays containing an antibiotic combination specific to Jerry's sinus infections. The doctor called in the scripts and we were to wait until the Pharmacy called us. So I decided to take my hubby home.

I was in pain and fatigued but able to drive Jerry home so I could proceed with my "to do" list. I went to pick up a couple of things for my Mom, visited my older sister for a bit, delivered Moms items and went home. I ended up having to babysit my nephew because my sister's sitter bailed out. My niece tagged along because she wanted to visit with me. I ended up spending the evening helping my nephew with homework and entertaining my niece. My focus was on taking care of others, so I was able to stop focusing on my pain. Sometimes this helps and sometimes it makes you feel worse. I was lucky and felt good until about 9:00 P.M.

I took a hot bath and went to bed. I was exhausted and had little to no trouble sleeping. The key is to move around, try to focus on other people but still take care of yourself.

A hot bath, deep breathing exercises will help you clear your mind of a busy day. Please remember that the way you breathe can have a tremendous effect on your body and on the way you feel throughout the day. Breathing in special ways can dramatically lower your heart rate and decrease blood pressure. It also does away with unnecessary muscle tension, as well as a therapeutic effect on a number of bodily processes. Tomorrow I will post benefits of breathing.

I hope you had a fatigue and pain free day.

Miracle of Life

2009-09-15T12:50:00.003-05:00

Hello Everyone,

Today I decided I must share this particular miracle with you. Again yesterday our family was reminded that my Mother and her having children is a true miracle.

My Mom has Ebstein's Anomaly and she went to have tests run and the technician said they had never actually seen a patient with Ebstein's Anomaly and many have only seen it in textbooks! It is truly amazing, just like our Mom!

Ebstein's Anomaly

Ebstein's anomaly is a congenital heart defect in which the opening of the tricuspid valve is displaced towards the apex of the right ventricle of the heart. The annulus of the valve is still in the normal position. The valve leaflets, however, are to a varying degree, attached to the walls and septum of the right ventricle. There is subsequent 'atrialization' of a portion of the morphologic right ventricle (which is then contiguous with the right atrium). This causes the right atrium to be large and the anatomic right ventricle to be small in size. There may be an increased risk of this abnormality in infants of women taking lithium during the first trimester of pregnancy, and in those with Wolff-Parkinson-White syndrome. Ebstein's anomaly was named after Wilhelm Ebstein. While Ebstein's anomaly is defined as the congenital displacement of the tricuspid valve towards the apex of the right ventricle, it is often associated with other abnormalities.

The tech said she wanted to take lots of measurements and pictures of Mom’s heart, because the doctor was not going to believe that Mom has a True Ebstein’s Anomaly heart without all the pictures. She was amazed and excited with Mom’s heart.

Mom told her she used to pass out as a teenager when she worked the fields and they would splash water on her face and tell her it was a reaction to the heat and keep working. The tech said that it wasn’t the heat, it was a symptom of the Ebstein Anomaly.

Professor Wilhelm Ebstein (1836-1912), who was a professor of medicine in Gottingen, Germany, first described Ebstein anomaly in 1866. The condition accounts for less than 1% of congenital heart diseases and occurs in 1 in 210,000 live births

Without any treatment, the natural history of Ebstein’s anomaly is gloomy. A 1971 study reported that only 50% of patients survived to 13 years of age.

Imagine that! My Mother is a very strong loving and intelligent individual whom I have always admired. Little did I know she was truly a miracle. She has never had any type of surgery or help with her heart. God works in mysterious ways so remember everyone....Keep your hope, faith and love going.

I hope and pray everyone has a pain and fatigue free day and enjoys the miracles in their life.

Track Your Pain Form

2009-09-15T12:42:00.000-05:00

I have created a form to help you keep a record of your pain. Take it along with you when you visit your doctor. Try printing several copies and try to fill one out daily. I have tried to make it simple to complete. I know it is difficult to write out everything.

DAILY JOURNAL FOR TRACKING YOUR PAIN

Full Name _______________
Date ________

What time of the day do you feel your pain?

_____When I wake up in the morning _____Throughout the day
_____At night _____All of the above _____Other

COMMENTS:
________________________________________________________
________________________________________________________
________________________________________________________

What activities caused your pain?

_____Walking_____Bending_______Going up and down stairs
_____Running_____Taking a bath_____Stretching____Exercise
_____Completing simple household chores____Other

COMMENTS:
________________________________________________________
________________________________________________________
________________________________________________________

Where did you feel the pain?

___Hands ___Fingers___Arms___Shoulders___Neck___Waist
___Abdomen____Ribcage___Legs___Feet___Toes___Thighs
___Knees____Head___Breasts___Hips____Ankles____Calf
___Other

COMMENTS:
________________________________________________________
________________________________________________________
________________________________________________________

Do you get any burning sensations?
___Yes___No___Sometimes

If so, Where?

___Hands ___Fingers___Arms___Shoulders___Neck___Waist
___Abdomen____Ribcage___Legs___Feet___Toes___Thighs
___Knees____Head___Breasts___Hips____Ankles____Calf
___Other

COMMENTS:
________________________________________________________
________________________________________________________
________________________________________________________
________________________________________________________
________________________________________________________

Do you get any tingling or numbness? If so, Where?

___Hands ___Fingers___Arms___Shoulders___Neck___Waist
___Abdomen____Ribcage___Legs___Feet___Toes___Thighs
___Knees____Head___Breasts___Hips____Ankles____Calf
___Other

Rate the level of pain: (1=mild, 5=moderate, 10=severe)
___1 ____5 ____10 _____Other

COMMENTS:
_______________________________________________________
_______________________________________________________
_______________________________________________________

What medication are you taking to treat your pain?

Medication/Dosage_________________________________________
_______________________________________________________
_______________________________________________________

When Taken ______AM/PM
Relief? ____Yes____No____Some

How long did the medication take before it worked?
___Minutes___Hour _____Hours_____Not at all

COMMENTS:
_______________________________________________________
_______________________________________________________
_______________________________________________________

I pray and hope this form helps out someone.

Take care,

FibroViv

Chronically Ill Unite September 14 to Blog About Invisible Illness Issues

2009-09-14T22:40:00.002-05:00

Hello Everyone,

I want to acknowledge this important week and will be reminding people about my tools and tips. Please share your story too.

Here is a small caption from the site you should check out:

National Invisible Chronic Illness Awareness Week, September 14-20, 2009, invites bloggers to have a significant role in their awareness campaign. For example, part of their outreach has been featuring guest bloggers on their own web site invisibleillnessweek.com , as well as inviting bloggers around the globe to commit to blogging about invisible illness issues. To help spread the word they have also create a meme, “30 Things About My Invisible Illness You May Not Know” that people have posted on Facebook, blogs and other social networks.

Click here:

Setting Goals and Pacing Worksheet - Using it again

2009-09-14T22:04:00.002-05:00

I looked back at my own tips and decided I needed to start using this worksheet. Try it out.

Monday, November 12, 2007

Setting Goals and Pacing Worksheet

Set daily goals first, then weekly, monthly and three month goals:

Make sure you set small and realistic goals.

1). Today I would like to:

_________________________________________________

_________________________________________________

_________________________________________________

2). What factors (within my control) make it hard for me to reach this goal?

__________________________________________________

__________________________________________________

__________________________________________________

3). What can help me reach this goal? Who can help me reach this goal?

__________________________________________________

__________________________________________________

__________________________________________________

4). To improve my pacing and get enough rest, I will do what?

__________________________________________________

__________________________________________________

__________________________________________________

Note: Use this worksheet or log to set goals to rest and pace yourself.

I hope and pray this log/worksheet will help someone today.

Fibro Viv

Slow moving today

2009-09-14T21:14:00.003-05:00

Hello Everyone!

I hope your day was better than mine. I was slow to wake up and move around. Eventually I made it to the living area and starting sweeping. Yes, sweeping, it was a very slow process and I did it in sections. I get stubborn and refuse to let my fatigue get me down, so I decide to complete a very hard task. I may feel worse after completing my chore but feel proud. I get these crazy ideas in my head and just do it. I was pretty worthless the rest of the day. My sweet hubby kept checking on me and heating up my pad. Two chronic people figuring out how our two half brains can combine and make one good one:)

I don't know if I ever mentioned my hubby was in a car accident in 1987 and suffered a head injury. He has memory problems along with his bad health issues. He is a trooper and does what he can. I truly appreciate him and love him dearly. The weather has affected his breathing and my asthma has tried to kick in. I am using an inhaler for now. I have my asthma under better control than he does. I certainly understand his struggle with COPD. You know what drives me crazy? The doctors assume that people with COPD smoke or smoked sometime in their life. He never smoked however, his parents were heavy smokers. I wish I could take it away from him after all I suffered from asthma for 19 years of my life. In and out of the hospital known as the hospital Queen. Well, I married the King because my hubby has been in and out of the hospital the past 5 or 6 years. We deserve each other. Smile Smile

Do you have certain habits that give your illness away? I noticed that when I am in extreme pain I rock back and forth. I will be sitting down having a conversation and just start rocking back and forth. If I have gone several days with very little sleep and rest periods, my neck hurts and my head feels heavy. I hold the front of my neck to support it. My head just seems to weight more on those days. Luckily my family has caught on to those small tips and remind me to take a pain pill or use my hot therapy. I think I go brain dead because I just sit there and deal with it until someone notices.

People say they are cured and have not had problems for years. Well, good for them. This illness is ongoing and we have to put in extra effort to feel better, not normal, just at an acceptable level. Our mind is powerful but we need help keeping that mind (brain) on track. Don't you think so? I don't know, maybe I am just having crazy thoughts again. At any rate, I am thinking about everyone and hope and pray you had a fatigue and pain free day!

Viv

Rain and Weather Changes

2009-09-13T18:10:00.005-05:00

Hello Everyone,

Rain is what we needed however, my body does not like any type of weather change. I am sure many of you experience increased pain prior to and during any type of weather changes. On the positive side...our body predicts weather changes. There is always something good about what is happening to us, we may not appreciate it at the time, but if we dig deep enough we can find something positive.

I am feeling much better since I have started back on my schedule. It takes my body time to adjust to the morning or afternoon, depending on when I wake up. My hubby gives me my medication and I stay in bed until I can get my head in sink with my body. I have to take Concerta ER, 30 MG along with my pain medication to help me wake up. Since I have never been able to consistently gain a good nights sleep and I try not to take sleeping pills, my sleep patterns and quality of sleep tend to vary. Interesting, when I finally fall asleep I cannot wake up, see saw see saw, you would think that would put me to sleep. Silly me!

Here is my schedule:

Hubby gives me my medication at a certain time if I have appointments, otherwise he lets me sleep in longer. I wait for the wake-up pills to kick in and slowly start small movements, starting with slow gentle arm lifts, wiggle my toes around, lift my legs and and move my head around. Depending on the pain level it may take me awhile to get going. My hands and fingers tend to fall asleep and my husband massages them for me to get that blood circulating. The best thing to do is to stick to a scheduled time for morning and bedtime. Unfortunately, my hubby spoils me and lets me sleep in because he knows I more than likely had a rough night. A warm to hot bath helps the aches and pains. I eat a small breakfast (these days it is oatmeal) and drink plenty of water. Always eat something for breakfast, it is good for you!

I used to have IBS problems, but I found eating small portions throughout the day and avoiding certain foods has nearly eliminated my IBS challenges. Here is a good tip, try not to remain standing or sitting for too long. Adjust your body position throughout the day. When you start feeling more fatigued, grab some pillows and sit on an arm chair or recliner. Place pillows under each arm, behind your back and neck, have your legs lifted with pillows under your knees and feet. Sit there for at least 5-10 minutes, it helps. If you are in pain use your cold and hot therapy. If you can nap, go for it, otherwise just relax.

Also, if you have a tens unit, use it! You can set it at whatever level helps your muscles.

I take care of my daily tasks slowly and have to rest during tasks. Some days all I do is fold towels and need rest. Take small steps and remember those chores will still be there waiting or enlist some help.

Good posture is important for your upper and lower back area. Remember to do posture scans. I will add the instructions for posture scans. My bedtime is inconsistent depending on my activity level I may go to bed as early as 7:00 PM or past midnight. It is interesting how our body and mind refuse to connect and stay in sink.

If you are unable move around and need help with circulation, have someone give you a massage. I also use the OxyPro machine, it is like sort of like the Chi machine. It moves your body and gets your circulation going. I place my ankles on it, set it for a few minutes and the speed depends on how I feel. I will place a picture of it down below.

Bedtime is interesting, I cuddle with my hubby if I am not sensitive to touch and later start my prayer list. I pray until I fall asleep. I have restless legs and have to wiggle my legs in bed to help me relax. My hubby takes sleeping pills so the movement does not bother him.

A funny story, when my nephew was younger and assisted with bedtime, I would lay down with him and my restless leg movement would actually rock him to sleep. My restless legs served a purpose!

I am sorry if this post is hard to understand, I am just typing away. My basic message is: Please learn from my mistakes.

1. Keep a consistent schedule (morning and bedtime)
2. Stick to what works with medications (I will probably always try to stop taking certain medications)

I pray and hope everyone has a fatigue and pain free day. Please remember there is always something positive about our experiences.

POSTURE SCANS

a. Where are your feet when you are sitting? They should be positioned under your knees with legs relaxed.

b. No slumping while sitting...make sure your shoulders are not rounded, your back is straight and you are sitting on an even surface.

c. Are your knees loose?....relax your legs.

d. Where is your head while sitting?....Lift collar bone, inhale, exhale but maintain collar bone position. Sit up straight.

Try doing this and checking your posture during the day. It really helps.

The use of my pillows are to replace the cost of buying the following (click on the link: Comfort Pillow Cushion

The exercise machine that helps me move without effort is an OxyPro. I basically just turn it on and place on feet on it while lying down and it moves my body around causing circulation throughout the body. I recently heard about a machine called the Chi Machine. I don't have a picture of my machine, but here is the link to the Chi machine: Chi Machine

Ongoing Tasks

2009-09-09T17:11:00.001-05:00

I am back to using the following tools and exercises:

1. The heat therapy pad - I prefer heat to cool pads (use what works for you)

2. Resting during the day, even if I cannot sleep, I still lay down and rest.

3. If you can get someone to give you a gentle massage it helps your pain and weakness. I also enjoy it when my son combs my hair.

4. My Prayer Position Exercise:

Movement is necessary, so slowly introduce stretching exercises and my prayer position stretch; I do this several times during the day. It helps, so please try it.

1. Start by holding your hands in a prayer position.

2. Raise your arms over your head keeping your hands together in a prayer position.

3. Turn your palms outward (the front of your hands are now placed together in this position).

4. Stretch your arms downward as you separate your hands bringing your elbows down and place your hands back into the prayer position.

5. Repeat (2 to 3) two to three times.

Note: Please make sure to perform this exercise within your pain-free range of motion.

Quiet time and nice soothing music helps me forget about the symptoms I experience. I hope and pray my own experience and prayers will be helpful to everyone.

Please keep me updated on your progress.

Viv