Archive for the 'Lyme disease' Category

Sick of Failing at, and Being a ‘Single’ Mom

It’s 11pm and guess what. Both kida are still up. I’m so frustrated it’s not even funny. I am SO sick of practically raising these kids by myself. It’d be one thing if I really WAS a single mom… as in I was the only parent responsible for raising them and the only one around to do it.

That’s not the case, though. I have a husband. A good man who works hard to provide financial support for us. Unfortunely that’s just about the only kind of support he gives us. He accepts the fact that I’m sick, have been for a long time, and looks like I will be, and he supports me in that regard in so much as he understands why I can’t keep the house clean and rarely feel like cooking dinner.

So why, WHY???!!!!! can he not see I can’t raise these kids by myself and HELP? The kids are almost 12 and 11 and for 12 years now I’ve been not just the primary caregiver, I’ve been the ONLY caregiver. I can count on 3 fingers the times in the last 12 years that Mike has taken charge of ‘bedtime patrol’ and made sure the kids get ready for bed and get in bed. Even fewer are the times he’s done so and make sure they went to bed with all their chores done and all their medicines taken.

Every single solitary day, if *I* don’t make sure they take all their medicines, Matthew flat-out refises to do as he know he’s supposed and will lie to us that he’s taken his meds.

Now, even WITH his meds, Matthew is an extrememly rebellious, disrespectful, disobedient, rude, mouthy, selfish, proud kid. If he doesn’t take his meds it is easily 100x worse.

So make sure he takes his meds, you say. That’s fine, I do try. However there are times when I just crash. My body is fighting all these infections and even with all the help it gets from multiple high-dose antibiotics, it still wears me out. And of course, extremem fatigue is one of the lovely features of these infections I’m fighting.

So it happens that some days, I’m so exhausted I don’t even hear the TWO alarms I set each night. On the days that Mike is off, or he knows the kids do not have school, he will turn the alarms off and just let me sleep. That’s wonderful and so sweet of him, you say. Sure, but if he’s not going to make sure Matt gets his meds and then go to bed without even saying he’s going to bed, just disappear all of a sudden right when Matthew’s lack of meds REALLY starts kicking in, leaving me to deal with all the hate, filth, disrespect, threats, and disobedience he spews at full force by myself, then I would much, MUCH rather he wake me up!

I’m so sick and tired of being the only one who even attempts to get the kids to take care of their chores, school/homework, medicines, etc. The only one who even attempts to discipline them.

Maybe if he weren’t here effectively being a bump on a log, my attempts at disciplining, instructing, and so forth, would be more successful. Or maybe not. Either way at least then I wouldn’t have the frustration of having to deal with it all myself while their father, just as responsible for them as I am, plays his video games, reads his book, or sleeps through all the nonsense.

At least then I wouldn’t have the frustration and heartbreak of watching my husband, supposedly my best friend, my leader, and my protector stand by and do nothing at all about his son calling me horrible names, threatening to kill me, throwing things at me, hitting, biting, or kicking me.

I’ve alwys had this picture in my mind of the way a husband/father stands up for his wife, and disciplines the disrespectful child for not saying “yes ma’am” or “no ma’am” to her. As much as I know in my head that there are fathers out there who would do that very thing because it’s what it right and how God intended for fathers to be towards their wives and children, I just can’t make my heart really believe it. It’s like make-believe, pure fantasy.

I love my family so much. Even the selfish, proud, rebellious, hateful son I have.Even the thoughtless, selfish, lazy husband I have. Meagan has moments when she doesn’t thrill me as well, but I sto;; love her, too. I love them all. I’m just so very disappointed in the way a couple of them are turning out. It breaks my heart in so many, many ways.

I hate that I’ve failed to turn out two good kids. I know one is a good deal, but it’s not enough. I want ALL my kids to turn out good. I hate that I’ve failed, and I hate that their father has failed. I know Jesus can make things like this turn around 180 degrees, but I’ll tell you the truth, it sure doesn’t seem very likely for us. I have prayed for so many years, and while we did see a little progress once we were able to get Matt the medicine he needs, it’s been pretty sparse.

I’ve heard our pastor say many times that all our failures are prayer failures, so I guess that means I’m not doing such a great job at that either.

Oh I’m not going to quit trying, so I won’t say I’m a failure, but I have failed, and I don’t know anything new to try or to change to NOT fail again. Most days my son’s future looks very. very dark . 

I’m just so frustrated and tired of fighting what appears to be a losing battle, and doing so on my own. I am sure lots of truly single moms feel the same way, amd I understand that it is different for them. I understand that I can’t understand completely how difficult it is for them, since they are having to be a single parent AND a single provider at the same time. But I also don’t think it’s a stretch in the least to call myself a ’single’ mom. I feel a closeness to single moms, I suppose you could say. I feel for them, because I have at least a small idea of what they have to deal with and face as a single parent.

I just wish that American fathers would start acting like true fathers. Get saved if they’re not, make sure they are if they are, and thenpick up a bible and find out how they are supposed to act and then listen to the leading of the Holy Spirit, and BE the kind of father God wants him to be. Maybe then us single and ’single’ moms wouldn’t have to carry so much on ourselves.

It’d be really great if they would also learn what God expects of them as husbands, too.

It’s Invisible Illness Week… who knew?

Unfortunately that is exactly the problem with invisible illnesses. They are the ones that cause devastating, debilitating effects, but to others if they find out the patient is ill, would say… They have _____… who knew?

The CALDA blog called Touched By Lyme had an interesting entry recently… “TOUCHED BY LYME: 30 things you don’t know about Lyme disease” Here’s mine—

30 Things About My Invisible Illness You May Not Know

1. The illness I live with: Lyme and other tick-borne infections
2. I was diagnosed with it in the year: 2008
3. But I had symptoms since: birth – 1978
4. The biggest adjustment I’ve had to make is: to not volunteer to help do things that tax me physically
5. Most people assume: Lyme plays itself out in a few weeks; sooner if you get a few days of antibiotics
6. The hardest part about mornings are: first getting out of the bed
7. My favorite medical TV show is: Mystery Diagnosis but I only see it infrequently because I can’t afford cable.
8. A gadget I couldn’t live without is: my shower seat!
9. The hardest part about nights are: getting to sleep around the pain and anxiety
10. Each day I take 42 pills & vitamins.
11. Regarding alternative treatments I: have not tried any
12. If I had to choose between an invisible illness or visible I would choose: VISIBLE, one that SCREAMS I’m sick
13. Regarding working and career: I can’t work
14. People would be surprised to know: how much pain I have and how often I am bedridden.
15. The hardest thing to accept about my new reality has been: I can’t do things I want to do or used to do.
16. Something I never thought I could do with my illness that I did was: go to junior church camp as a counselor!
17. The commercials about my illness: are non-existent.
18. Something I really miss doing since I was diagnosed is: waking up, going through the day, going to bed… without having to stop and take a bunch of pills.
19. It was really hard to have to give up: homeschooling
20. A new hobby I have taken up since my diagnosis is: sleeping
21. If I could have one day of feeling normal again I would: would not fully know it, as I’ve been ill since birth.
22. My illness has taught me: I have to take care of myself in order to take care of my family. Also, how to go to a doctor and talk to him about ME.
23. Want to know a secret? One thing people say that gets under my skin is: it must ‘all be in my head’ since Lyme is ‘cured’ by a few days of antibiotics. My doctor isn’t looking to cure me. Just get me into remission.
24. But I love it when people: ask how I’m doing and actually want to know the truth.
25. My favorite motto, scripture, quote that gets me through tough times is: God will not put on us more than we can handle. Jesus will help me through.
26. When someone is diagnosed I’d like to tell them: as much as I can about what to expect in the coming months, and that yes, it WILL get better… eventually.
27. Something that has surprised me about living with an illness is: how totally it affects every little thing you OR your family do.
28. The nicest thing someone did for me when I wasn’t feeling well was: prayed for me and told me they were.
29. I’m involved with Invisible Illness Week because: Most of my family (parents, brothers, children, myself)and some dear friends of mine all have one or more invisible illnesses.
30. The fact that you read this list makes me feel: blessed.

I’ve read through some of the others and one thing that I have to agree with them on (but I answered differently) was that most people think I am ‘normal’ or ‘not sick anymore’ – if they ever knew I was. These infections mess up and take over so many different things in the body it takes months, years in most cases, to be ‘not sick anymore’. I am doing so much better than I was a year ago, but I am nowhere near ‘not sick anymore’.

One sickie, two sickie, three sickie, four…

Oh my am I behind in my record-keeping. That’s problem because we’ve had SO many sickies here lately.

Dad’s back in the hospital and has been for a week.

BOTH kids were put on 4x daily nebulizer treatments last week.

I’ve been slowly (SLOWLY) getting better after pretty much being completely out of commission for all intents and purposes since Jan. Had another med change last week after I called my doc to ask a ? and he had the nurse call me and tell me to “be here at 1:30!” lol

Turns out my tendons had been on the verge of rupture for several weeks. Go figure! He changed my meds, wished he could do more tests but opted not to since I have no ins, and told me to ride along with my folks when we brought my dad in the following week (would be tomorrow).

Dad’s appt is currently cancelled, though, since he’s still in the hospital.

Anyway.

I haven’t gotten much laundry or dishes done at all, just barely enough to get by. I have been getting a meal plan made up and have been keeping the groceries under the $80/wk I just haven’t been getting the details posted or recorded.

Besides everyone being sick, my computer is really sick, too. In fact, it may be dead. I can’t even get it to turn on. =(  ALL my pictures are on there for the last 5yr at least, and of course all my emails and bookmarks and personal files.

I’m hoping my brother can rescue the important stuff somehow. In the meantime, I’m having to use Mike’s computer to do anything. That means I pretty much don’t use the computer. lol

One thing about it… I have had way more time to get stuff done. I’ve been spending WAY too much time reading blogs apparently!

It does make it difficult to keep up with coupon deals and the like, though.

Guess that’s it for now. I’ll try to get some of the counts better updated in a day or so.

Groceries and Dad again

That seems to be the standard theme around here lately. Probably because I’ve been too sick/busy to even THINK about anything else… let alone blog about it.

Went grocery shopping for the first time this month. I spent $80.82, so 82¢ more than my budget for the week, plus I still need bread. =(

BUT!!

I didn’t go grocery shopping LAST week at all. I’m still not ‘ahead’ because the week before I stocked up on the chicken which used most of last week’s budget.

However… =)

I am almost (I still need to get a little more ground beef stocked) at the point of being able to float by each week needing only the bare essentials replaced… milk, bread, cereal, fresh fruits, and toilet paper. LOL

I bought some soaps today, so aside from laundry detergent (which I will likely be making up a batch of DIY stuff soon) and dishwasher soap (which I will likely be trying to replace with vinegar and baking soda), I shouldn’t even need much in the way of non-food groceries for awhile.

I have shampoo, toothpaste, deodorant, liquid dish soap, bath soap, lots of ziplocs, etc. I even got stocked up on cat food (well, the canned stuff anyway).

Also, I got the kittens collars and bought a new phone. Both things were on my list to purchase with ‘leftover’ grocery $$ when I could, so I can scratch those off the list now and move on to the next thing. =)

~~~~~~~~~~~~~~~~~~~~~~~~

Tomorrow is going to be an interesting day.

Dad is still in the hospital, but they tried to send him home today. Mom said uh-uh because they still hadn’t gotten him eating anything more than clear liquids, nor have they given her any kind of instructions on his care or told her what is going on or what the plan is for his surgical site (still held together with what they call “spoons and wires”). Also he has been VERY disoriented and confused, not to mention depressed. He’s hallucinating, too!

He is aware that his brain is not functioning properly and when Mom said that if she needed to exercise her medical power of attorney to refuse discharge from the hospital (he wants to go home so bad, poor guy!), he told her that he hoped his brain cells would be functioning enough to realize that she is only trying to do what is best. So it seems that he is worried his brain is getting worse… or maybe he knows for sure it is getting worse… or something.

Anyway. It’s gonna be real interesting to see what happens tomorrow since the hospital’s infectious disease ‘person’ (an RN, not a doc) will be reporting Dad’s extremely positive ehrlichiosis (a tick-borne infection) test results to the CDC. His primary doc HAS been informed of the test results and so far has done NOTHING with them. This is an infection that is supposed to be treated if even SUSPECTED. In other words if the docs think you MIGHT have ehrlichiosis, they are supposed to start treating you with doxycycline before the test result comes back to confirm it. Why? Because it can kill you if they wait too long to treat.

Now obviously it did not kill him before the test result came back, but he should have been prescribed the antibiotics back before they drew the blood even! That was a month ago!

*sigh* It’s all just so frustrating and my poor mom is about at her wit’s end trying to get someone to take care of Dad!

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