My Chronic Life

I learned that one of the symptoms of hypokalemia is depression. I’m not feeling so bad about feeling so bad now. Seriously this depression is getting to be annoying. I try to get myself out of it, but that’s like me trying to wish myself to become a geek and know things like msql databases, micro sd cards, css and Plurking.

This kind of depression is only going to be cured by me picking up the phone to call my Psychiatrist to make an appointment. He may increase the Cymbalata or add something. But that takes effort that I don’t have, plus it means another doctor visit, which I’m avoiding like the plague.

I know I should do it and I probably will when I get to the point of not being able to get out of bed. Just kidding, really.

I’m in one of those funks where I’m having trouble feeling positive about my health issues which translates into feeling sad, frustrated and angry. I’m also feeling guilty too because I haven’t been doing much of being a parent to my daughter. I spend too much time sleeping and feeling like a zombie than to feel capable of really being there for her.

It’s times like this when I think back to what my life was like before I was sick. I even dream about it. I catch small memories of my life like they’re in picture frames as a wife and mom who worked, took care of my children, my house, cooked homemade meals every day and volunteered for tons of things.

I was the mom who was there at school for all of the special events. I was the mom who could take care of a toddler and a teenager. I know that even if this flare doesn’t get better I’ll find ways to handle my life. But it’s hard to admit that I’m so sick again.

I recently stood on a scale and got weighed. It wasn’t my choice. I was at the doctor’s office and it was pretty much mandatory. But guess what? I was pleasantly surprised! I ended up weighing less than I did a month ago, even 6 months ago. My blood pressure was normal too. I’m in shock but very, very happy.

With the hot weather upon us already I can actually picture myself tying on swimsuits without freaking out. I can even think about buying some new shorts and capris too. How a few minutes on a scale can make me feel a bit light headed is quite funny to me.

I guess the short time I ate junk food while stressing out over the Single Mothers ministry at church didn’t really affect my weight. And adding some easy exercise is helping me out too.

This Saturday is a very important day for me and for my church. We are having our annual Single Mothers Appreciation Day where we pamper the mothers, provide childcare, lunch, chair massages and more. We also get to share the Gospel with them and their children. The women who attend love it. We have a lot of women return year after year.

The problem for me is that I am not feeling well. I’m getting really bad stomach cramps that I’ve had before which caused me to be sick for days. I needed an antibiotic and couldn’t eat much or move around.

My friend and I run this ministry. I can’t be sick! I’m praying that this is just a fluke and it will be over soon. I have a feeling that this may be have been caused by something that I did by accident this morning.

I take two pills before breakfast and dinner for my stomach. This morning I think I took those pills twice! I’m praying that this mistake will run it’s course and be over with very soon. I take so many medications and even though I keep them in pill sorters I often get mixed up about what I’ve taken or didn’t take.

If I tell my doctor I sure hope he won’t send me to drug rehab thinking I did this on purpose! But believe me these aren’t the kind of pills that anyone would take as a “recreational drug”.

I’m not sure what’s been causing the latest issue I’m having with severe dry eyes. I’m going through one whole tube of artificial tears, sometimes even starting another one. I’m already on Restastis, taking Folic Acid and Fish Oil, but my eyes are are still bone dry. They actually hurt and feel like there’s sand in them.

This isn’t a new thing for me. I was doing alright for a while though and thought my Opthamologist had solved the dry eye issue as much as possible. I have tear duct plugs in each eyes so that the tears remain in my eyes instead of draining out. With the combination of medicines things were pretty good. But for about a week or a little longer it’s gotten worse though.

I know that I need to call for an appointment but I’ll do my home remedies while I’m working on my Single Mothers’ ministry scheduled for May 3rd. My doctor is one of those that you only dream about or see on TV. He treats each patient as an individual and spends at least 20 -30 minutes with you. That’s unheard of now a days.

Because of this, he’s booked solid. And when you get an appointment you have to wait for hours to see him. I just don’t have the time now. So I’m using the artificial tears (without preservatives), taking my medicine and supplements, resting my eyes often and putting warm compresses on them while I rest.

If this doesn’t clear up after May 3rd, I’ll be making an appointment. I forgot the latest things that’s going on. My eyesight is terrible. My cheater glasses are now a 2.75…horrors! This may be due to the increased dryness. But I’m not a doctor. I only play one at home.

photo credit: daksha

My family and friends have noticed that my stress level has been increased a great deal in the last few weeks. I have a big responsibility at my church coming up. It’s a Single Mother’s Appreciation Day. My friend and I share getting this ministry off the ground each year. It’s a lot of work to do and with the day approaching, it gets more stressful.

I had a migraine this week that lasted for two days. I know it was related to the stress I put on myself. Instead of accepting that things get a bit frazzled now, I began to worry. That same day that I felt like I was going to explode because I got a late start to my day and thought of all I didn’t do, I got the migraine. See how it works?

When I told Darlene, my friend about what happened we decided that we need to call each other when things are feeling like they’re piling up on us. We can talk about it, spend some time together relaxing with some iced tea on the patio furniture at another friend’s house and re-focus.

I’m still working on giving my worries and problems over to God as he is the one in control.

Every once in a while I watch Celebrity Fit Club. This show really aggravates me because I just can’t imagine people losing that much weight in that short of time and doing these really difficult fitness routines but still having the energy to go out to bars, have parties, get drunk, stay up at night talking and acting like fools. But, that’s just my opinion.

I guess being on television, having an ex-Marine (oops I don’t think there are ex-Marines!) yell at you like you’re in boot camp, having to show your before and after body shots and weigh in may play a bit of a factor in their desire to lose weight.

I remember on one of the shows the old American Idol host, Brian Dunkleman saying at weigh in that he though he had gained weight because of muscle growth. I thought now this guy is smart! I can use that excuse the next time I go to the doctor and my weight is up instead of down.

Seriously, I’ve been told so many times about yoga that I’m going to give it a try. Since my foot and knee problems have now put an end to my walking, I have to do something to keep active. I have to try to lose some weight. And since there’s no Non-Celebrity Multiple Chronic Illness Fit Club, I’ll be doing it on my own, thank you very much!

Having Myasthenia Gravis and living in Florida pose a huge problem. Since the temperature is often in the 80’s beginning as early as April, staying out of the heat is difficult. You see one of the things that makes MG symptoms worse is heat. Even walking outside to get into an air conditioned car can cause problems. I do try my best to remain in air conditioned buildings and cars.

Even doing that may not be enough. My neurologist tells me that just feeling that blast of heat for a few minutes can cause me to not feel well. He says that he gets more phone calls, emergency appointments and emergency room visits as the weather gets hotter.

There’s so many things that I miss doing in the “summer” in Florida. I miss the beach. If I go I have to have a place nearby where I can get cooled off quickly, so that means not using public beaches. I miss sitting taking my daughter to the park so she can play on the swing sets. I miss going for walks. I miss going to Disney World during the days in the summer.

My attitude has been and will always be though, that although there are things I can’t do, I will focus on what I can. Five years ago, I couldn’t even get out of bed. I was unable to do most anything. The MG is under control now so I’m grateful for that!

I take a nap almost every day. I have to. I can’t help it. I can’t stay awake. If I force myself I end up talking gibberish, doing things backwards and making an utter mess of my life and my family’s too.

While we were away this past week on vacation at Disney World, I really had to nap. I used my scooter to get around the parks but I still got so tired I had to sleep or I wouldn’t have been able to go out in the evenings.

My good friends came for the day with their three children and a baby that my friend babysits. We went to the Magic Kingdom for part of the day. We were there for a few hours when I started getting that melt down feeling. I didn’t want to ruin their day but I knew I wasn’t going to make it much longer. When I told them it was fine because they all wanted to go swimming at the hotel pool.

Back at the room I feel asleep on a small love seat. I was so uncomfortable, but I was so tired it didn’t matter. I could have fallen asleep in one of the baby cribs I’ve seen in the hotel rooms.

No one could believe that I slept through everyone coming back from the pool, children crying about not wanting to leave, packing up and all kinds of noise. But I did and I’m pretty proud of it

I’m still the same me but I get tired and cranky too often. I forget words and names. My voice sounds scratchy a lot of the time. I have bruises from getting injections or bumping into things. I listen to you teach me something but in a few minutes I need you to teach me again. I walk slowly. I hurt a lot all the time. I don’t go out as often as I’d like. I try not to, but I end up taking a nap almost every day.

I get short of breath from doing little things. I feel dizzy or weak sometimes and I have to sit down. I can’t walk long distances. When I say I need to take my meds, I mean it. I have trouble swallowing sometimes so I really can’t talk on the phone when I’m eating my meals. I take a long time to swallow my pills. I get frustrated, sad or angry for things you don’t understand.

But it’s still me - funny, talking too much, smiling a lot, wanting to help out, loving hugs, being odd, being myself. Thanks for sticking with me my friends! I love you for it.