My Chronic Life

When I became seriously ill about 4 years ago I was unable to work any longer. I tried to by first giving up one part time job, then the other. Both of these were in my given field which was Social Work in a health care environment.

I held onto my full time job as long as I could. It was a telecommuting job as a Customer Service Rep. I ended up really enjoying it plus the perks were out of this world. I could work basically any hours (I did have to make phone calls to retail stores during normal business hours, but the other time was my own to decide when to use it), I could nurse my infant, not put her in daycare, be home when my older daughter came home from school and go to school events. I also didn’t need to drive anywhere, saving gas money, didn’t need a work wardrobe, saving lots of money and didn’t need to eat lunch out as I often did when I worked away from home.

My supervisors were very understanding when I got the diagnosis of Myasthenia Gravis. They allowed me more time off for doctor’s appointments, understood if I didn’t get something accomplished on time like I normally would and just “got it”.

But as my muscular weakness progressed, I had issues talking on the phone. I had store managers think I was drunk due to my slurred speech, the employees and even my supervisors couldn’t understand me. I became so fatigued that I made errors and lots of them.

I worked and then slept. That was my day. Nothing else was done. I could barely care for my then toddler. I ended up having to have a caregiver come to our home to watch her. The stress was making the disease worse.

I’ve often heard it said that men identify themselves by their work. But I did too. When I realized I couldn’t work any more, it was one of the hardest decisions to make. I felt like a nothing. I remember going to a counselor and telling her that I viewed myself as a “slob”.

About 6 months later I found DOUA. This is a non-profit group that helps people with any type of disABILITY to learn how to sell online. I just wanted to do something, anything that felt like work! I joined and sold some things from around my house.

I loved this place. It’s not only a teaching site, but a support group too. The little I learned started to help me gain back some of my confidence. I became a grad student after selling 5 items on eBay. Then I was asked to be a mentor. This was  such a shock to me!

I still had the mindset that I couldn’t learn so how could I teach. Marjie Smith, the founder and Executive Director, told me that I could help people by being like a cheerleader for them. Giving them a push to strive for more.

I’m happy to say that although it’s taken me years, I’ve kinda sorta got a feel for html. I helped make my own website. I have an eBay store and two blogs. I can get around the internet and join message boards and places like Stumble Upon, Mosaic, My Space, etc.

DOUA gets the job done. It is my favorite non-profit organization because it gives “a hand up not a hand out”.

I’ve been bragging about my Little Bit. He’s been so kind to me and Peanut while we’ve been sick - me most of the time, Peanut - for a few days just recently with a fever. Even today Peanut got a nasty cut on her knee and she was crying when it was time to take her bath. Guess who sat in the bathroom with her? Yup, our fur baby.

He deserves some love and pampering. I found this site Internet Pet Emporium that really lets you go all the way in making your pet feel like a bona-fied member of the family. I mean who doesn’t want to make sure their cat or dog has a comfy place to sleep and a snazzy feeding bowl or some cool dog clothing?

The cat houses (not those kind) are just too much fun and cozy to choose just one. But if I had to, I’d choose the Cat Hut knowing how Little Bit loves to hang over things like the arms of our couch and the top of my recliner. He also likes to hide out once in a while so this would be just right for him. It would be like his own permanent paper bag but not so noisy for us. And our couch may last a bit longer than expected.

These feeders are just right for us since we travel so often. Little Bit can be fed 2 meals a day so he won’t stuff himself on all the food at one time. We can choose the 48 hour feeder or the 5 meal feeder. Choices, choices! The great thing about these are they are run on batteries. Living in Florida and having lightning storms so often, our electricity often is out. We’d feel safe and secure knowing that our cat was being fed just in case this happened.

You’ve just got to see this!

Pet strollers have got to be the cutest items The Internet Pet Emporium carries. I’ve never seen anything like this except when I was a little girl. I had a friend that would dress up her cat in doll clothes and take her out in a baby stroller. I know Little Bit wouldn’t have anything to do with this but I’m sure there are plenty of other pets that would. All I can say is, “How cute!”

When you’re down there’s nothing like a fur baby to get you feeling good. What is it about a cat’s purring and kneading on me that makes me feel so loved and comfy?

Peanut’s been sick. I swear Little Bit has ESP. He had it when I was pregnant with her. He’s had it all the time I’ve been laid up with one thing or another. And he has it with Peanut too. When her fever was running high he went to the couch and slept next to her. When she woke up in the middle of the night all confused and sweaty he ran from his nappy place to the door of her room to stand guard while I took care of her. When she started to feel better he came and played with her.

This inner sense is quite amazing to me. I still remember being with big belly and him laying right around that belly, not too hard and not on the baby bump. When I came home from the hospital he seemed to know that I couldn’t have a lot of activity around me so he slept by my recliner instead of on me. When I’m feeling so tired, so fatigued that I can’t move he’s always there with me giving me that TLC only he can.

Little Bit, you’re my sweetheart.

Peanut is in third grade now. She actually loves school. As a matter of fact she cried today because she was too sick to go to school - a first! She’s running a fever, has a sore throat and headache.

Her teacher is awesome this year. Peanut says that she makes everything exciting, even math. And this year something else is exciting. For the first time in our county we have a “virtual student.” On Peanut’s first day of class we saw a huge teddy bear sitting at a desk. Ms. Lewis explained that it’s her stand in for a student who is homebound but will be attending class by videoconferencing.

The young boy has Hyper-IgM Syndrome which means he doesn’t have an immune system equipped to fight off germs. He’s adorable and so eager to be part of a real classroom.

A reporter came to visit Peanut’s classroom. She said it was about Kevin. So we waited for the newspaper to print the story. We eagerly shared the info with everyone we knew. Peanut gets to be part of a child’s life with an invisible illness and this means the world to her.

It’s not jut mom who has something wrong with her. Now she knows a child her age who is sick like mom.

Another place to learn about people with Invisible Illnesses is the yearly event being held this year for the week of September 10 - 14th - The National Invisible Chronic Illness Awareness Week.

Go take a peek, see what conferences are being held and help spread the word!

When I called in the calvary I did the right thing. My Uncle L who lives about 2 hours away came in today to set things straight with my Mom. He did an excellent job. He told her that what she’s doing is harming herself and everyone around her, including my Aunt and Uncle that she lives with and takes care of.

Before Mom came to my house, Uncle L and I sat down and wrote out what we needed to make decisions about and how to approach my mother. We had the list in our hands and just went through them point by point. We got her to agree to everything except getting extra help for shopping and taking them to doctor’s appointments.

Uncle J came out of his surgery well but we got the news that his bladder isn’t working well. So he still may have problems, but we remain positive. He’ll be going to a Rehab Center for a couple of weeks and then home. I’m to call 3 agencies that provide overnight caregivers so we won’t have any issues come up that are surprises.

If he gets back to his normal self then we won’t have to continue that kind of care, but we will get a baby monitor or some device to keep in his room so my mother can hear if he gets out of bed.

I am very tired and my foot is hurting me, but I’m happy to say that my Uncle is getting better, joking and laughing again and we made progress in the caregiver duties of my Mom.

Life can surprise you at times. It sure did today.

This has a been a week, a really tough week. I’ve slept a lot but fitfully. I’ve had ptsosis (drooping eyelid), muscle twitching, the RA acting up as well as the Fibro. I have this darn inflamed nerve on the bottom of my foot that with rest, wearing sneakers, even at home (yuck, I wanna go barefoot!) and taking Meloxican daily instead of every once in a while hasn’t cured it. It’s even made my ankle and shin hurt (oh boo hoo).

So let’s add to it, why don’t we. I have tons of eBay items in the office aka the eBay Monster all over the place. I have paperwork for my health insurance piled up and then the SSDI payee form to do, bills all over so I can’t find anything on my desk at all.

Now some more, you know you want more. My Uncle who is under the care of my Mom is in the hospital. My Mom is his guardian. She is 78 and has her own health issues and is overwhelmed. He was sent home and then re-admitted. He’s had the beginning of Alzheimers but it hasn’t been so bad. But now he’s hit the wall. He’s totally confused, pulling out catheters, IV’s, and getting out of hospital beds.

Mom is Denial, big time. So I can’t keep my right eye open, can’t keep either eye open because I’m so tired and can barely move. But this is all on me now.

I can’t handle it. I want to run away from all of it. I want to scream, hit things, but I can’t. I’m too tired. That stinks. Ever been too sick to show your anger? That’s a real low for me.

Tomorrow my Uncle has surgery. Pray for him, my Mom, me, my hubby who is about to lose it too and our whole family. Another Uncle is coming in so that he can help get things in order. Thank God!

Signing out for now….it’s sleepy time for me.

I was able to wake up on time to get Peanut off for school on her first day thank God! And I was able to wake up and pick her up from school on her first day.

In other words after I took her to school I slept most of the day. I came home, got started on the office and felt that awful I can’t keep my eyes open any longer, eyelids actually closing feeling.

As much as I hated it, I went to sleep. I set the alarm clock for 11:30. Then set it for 12:30. I didn’t wake up until almost 2:oo. I ate a few quick bites for lunch, took my meds, took a call from my hubby who wanted to be sure I was awake and then drove off to pick up Peanut from school.

It was better that I slept so I could stay awake for her when she came home. I got to listen to her tell me stories about her new teacher, her friends, the new cafeteria and about how her classwork will be. I even made an easy peasy dinner of tacos in tortillas, put laundry away and cleaned up after dinner.

Now I’m off to bed again.

Tomorrow is Peanut’s first day of school. Today I’m still feeling a bit fatigued but went to church, visited my uncle in the hospital (not very smart thing to do since I’m on immunosuppressents) and then helped Peanut get her school supplies ready and packed into her backpack.

We also chose her uniform, shoes and hair accessories. What a girly-girl I have. Funny cause she wants to be a tom boy half the time.

Tomorrow I have to wake up at 6:45 AM. So hubby will wake me up before he leaves for work. I’ll take my shower and get myself ready first then wake up Peanut at 7. She actually doesn’t need to be up that early so if can’t wake up it’s OK. Just a precaution really.

I’ll be walking her to class tomorrow along with hundreds of other parents so we want to get there early. Her classroom is a pretty far distance, but I’ll make do. After all it’s for Peanut!

Then I have to get a handle on this office, rest a bit so I can be awake for her after school and make dinner.

It’s kinda funny re-reading this post. I realize how much I have to plan ahead of time. But it’s best to do it this way for me. I have back up plans in my mind in case of emergency. And not rushing will not get me stressed. So I’m going to work on this schedule to make mornings and the rest of my day better.

I’ve been taking it easy on myself as I’ve had a flare of the MG - Myasthenia Gravis. When I rest up I have a plan. This isn’t your ordinary just sit around and do nothing rest. No this is a rest with a purpose.

Here’s how it goes:

• I must be comfortable so there’s no sitting up to watch tv in bed with pillows stuffed under my head. If I want to watch tv I’ll sit in a recliner. If I want to sleep I go to bed with my favorite pillows.
• No disturbances when I’m sleeping. Now this is difficult as I have an 8 year old home from school but luckily I was able to get some help with her for a few days.
• My fur baby cat Litttle Bit, who is no longer little, can be with me as his sixth sense knows I’m sick. So instead of waiting for him to pounce up on the bed I invite him in so we can cuddle. There’s nothing like a purring, warm cat nestled in with you.
• My medications must be taken on time. This is the exception to the rule of “no disturbances”. If I’m home alone, I’ll set two alarm clocks and have someone call me to be sure I am awake to take them.
• I try to eat very bland but healthy foods. Again if I’m alone I’ll wait until hubby comes home to fix dinner. I may just eat fruit or crackers during the day.
•  I pray a lot. This is my time to feel at peace as much as possible. Flares make me angry and frustrated at times so I turn to prayer to ease those emotions.

When you’re chronically ill, even resting has responsibility but done well it can do you a world of good.

I am so thrilled to have a new blog. Thanks to Jenn from Everyday Randomness and 2CheapBlogs for this opportunity.

This is as good a day as any to start posting here. You see I have multiple chronic illnesses. And the last few days have been pretty much a wash. I just started feeling better today. I am so looking forward to getting back to my normal life.

Tomorrow is Sunday and I will get to go to church. I absolutely cannot wait. This will be my reward for the last few days of feeling like a blob.

I also cannot wait to get this blog going. I sure hope that you will stay around for the ride.