When were you first diagnosed with fibro?

Friday, March 26, 2010

Getting children to school

Monday through Friday during the school year really causes my fibro symptoms and depression to flare up! The 11 year old is difficult to wake up and get out of bed, it takes no less than 30 minutes of me shouting for her to get up. Then we go through the drama of getting dressed! Always an excuse, clothes don't fit, can't find what she wants to wear, etc...... Getting the clothing around the night before does not help, she changes her mind about what she wants to wear, forgets something, whatever..... More excuses. Then we start the search for the sweater and book bag.... again, attempting to prepare the night before does not work. The 5 (almost 6) year old is not a huge problem, she just tries to mimic her sister's behavior but she does not stick to it, she is easy to redirect.

By the time I get them to school I am exhausted!!!! I have tried everything...... Talking to staff at school to see if there is a problem hasn't helped, no punishment I can give has any effect other than to make the home a battlefield! She is an Honor Roll student, so it's not an academic problem. I guess I just have to deal with it until she (I hope) graduates.

Funny thing is, she wants to go to a charter school next year that has a longer school day and a longer school year!!!!!

I remember going through all that as a child, back in the day when parents hit their children with belts. I did not, however, get away with a flat out refusal to go to school!!! I would never want to hit any of my children with a belt, but a spank on the rear with my open hand may prove helpful, but you can't do that these days.... We have to treat children as miniature adults..... reason with them instead of spanking. I do not agree with those that use a spank as a first response or slap anywhere other than the rearend (clothed), nor do I advocate beating a child, but they are NOT mini adults! They do not have the life experience or reasoning abilities that one would hope an adult would have and sometimes words are NOT enough to teach them whet they need in order to grow up responsible adults.

From what I've written above, one would be inclined to think I spank my kids. I don't. I have heard atleast 3 cases where a parent was at least investigated by Child Protective, locally, for spanking. These cases happened at 3 of our area malls, if I recall correctly. I don't know what the outcome of any of them were, but my children are my life and I'd rather not risk putting them through that. And, also, there is my fear that a spanking in the heat of the moment could let the temper I've worked so hard to repress escape and escalate the situation, so, though I believe spanking is a last resort kind of discipline, I do not practice it.

Wednesday, March 24, 2010

My Baby

I nearly forgot this, but it's too cute not to include just because I remembered just before going to bed!!!

I have a Congo African Grey parrot who will be 1 year old in July. She has spoken a few words already ("Thank you" "Love you") but now she is adding the sound we here when our cell phone gets a text or e-mail!!! She also whines and barks like a dog, but the cell phone imitation is just too cute!!! She hasn't gotten it exactly, but close enough that we do recognise it. I know this species is know for it's intelligence and speech ability, but I was told the imitation does not start until later. I'm pretty sure she understands the words she says..... If I give her something she says (sometimes...lol!) "thank you" and she says "love you" when we are snuggling (though I tell her "love you" more when I am just passing by her while she is on top of her "bedroom" or when I have to leave the house without her.) Hmmmmm..... who is trying to train whom?

Olay Regenerist

This is but my own unsolicited opinion of a product I purchased: Olay Regenerist- I bought the Daily Regenerating Cleanser, the detoxifying pore scrub, the regenerating serum, eye lifting serum, and the filling and sealing wrinkle treatment.

First, I have had oily skin since forever, so wrinkles aren't a huge concern, but along with that oily skin also came huge pores, mostly on my cheeks, just under the eyes. Second, I do have rather deep creases under my left eye from the damage done to that part of my face in a car accident, as well as some scars. I have not tried many remedies, just vitamin E oil and olive oil for the wrinkles and scars.

Ok, so here's what I think so far. I have been using these products for about 3 weeks now. The only difference I can see between the cleanser and the pore scrub is sudsing. The pore scrub suds a bit more but after using either I do notice my pores appear smaller. My skin feels clean without being too dried out, nor does it feel greasy.

The regenerating serum and the eye lifting serum both do a great job with those deep wrinkles; making them a bit less noticeable, but I don't think I really need both. I think the regenerating serum alone (larger amount for the money) would suffice, but maybe the difference is a more eye friendly mix of ingredients in the eye lifting serum? I don't know. The odd part about these 2 is that I see a bigger difference with the deeper wrinkles and scars (though not marketed for scars) than I see for the few finer lines. Go figure!!!! The filing and sealing wrinkle treatment does really well with the large pores and a kind of deep scar between my brows, but applying foundation over it requires a light touch (I use a foundation brush and kind of a light blending with finger tips on the rare occasions when I wear makeup) but it blends nicely with my skin so foundation really is not needed. Mind you, it does not make my scar invisible, just makes it appear less deep, a little shorter and thinner. Under the eye with the deep wrinkles, it makes under that eye look a little baggy, but under my other eye it does ok. I think for this array I may have paid about $50-$60, but if I didn't buy the eye serum and one of the cleansers, it would have been, I guess, $20 or so cheaper. I did try the stores equivalent of all but the filling and sealing treatment for a few dollars less per item, and they were not all that bad, but the first ingredient on the label for those was (drum roll, please!!!!) WATER. So I opted for the Olay products as the store branded equivalents needed refilling. Worth the extra couple of bucks? I don't know, but if I'm only saving $5 or $10 every couple of months, I'm opting for the brand name and will save the money some other way.

Family trip coming up

Well, my 18 year old got her money from the accident. She opened both a checking and savings account, as well as keeping the bulk of the money in the certificate of deposit, until it reaches it's term. So far, there have been no unreasonable requests for money from any one, but it has been only 1 full day.

She does want to go to Indiana to visit her dad and his side of the family (whats left of it), so that is where we will be going in April. Then I bet I will have some pics to put on my blog.

She also wants to buy a house, though she has enough for a decent down payment, she does not have enough to pay in full, which would be a problem. I suggested that she look into a double home, one half for her and her little family, and the other for me and 3 of her sisters. She would provide the down payment, I would make the monthly payment and the deed could be either in her name or both our names. Her boyfriend, however, wants to buy a house his uncle is trying to unload. It appears, from the outside, to be poorly taken care of. I have not seen the inside, but she says it seems to need a lot of work. The neighborhood it is in could hardly be worse, just a few hundred feet from where the hookers do business while the police pretend not to see-"nothing unusual about a girl wearing a skin tight mini in freezing temps approaching cars that stop for no apparent reason (wink,wink)"! I did point out that buying from a relative still requires a title search and inspection, even if she could pay in full on the spot. And a lawyer!!!! But, the choice is hers in the end. I can offer the guidance she asks for, but I can't make her do something just because I think it is in her best interest.

I do get to plan the trip, though, which I enjoy doing...... The hunt for the best hotel deal, the things to see!

Tuesday, March 23, 2010

The accident

I said I was going to elaborate on the car accident of 11-14-1998, so I guess now would be as good a time as any.

It was evening and we were on a road that was in a rural area and was a truck route. It wasn't completely dark yet and there was a fine mist of rain, so headlights and wipers were called for. In my car with me was me ex husband and my new born (11-5), my 4 yeal old and my 6 year old. I remember seeing headilghts coming at us in our lane, I remember saying my ex's name and steering to the right and braking. My thought was "don't lose control and make it worse, put even pressure on the brakes and get on the shoulder of the road". The next thing I remember was one of the older kids looking at me while getting out of the car. Some one said "the baby is dead" (she wasn't, thank God). I was trying to undo my seat belt, but I couldn't do it with my left hand, it wasn't working (the hand) so I used my right hand, but I still couldn't get out. I didn't know how hurt I was because I did not feel any pain. I must have blacked out then, because I felt I was floating, it wasn't in darkness but it wasn't light, either. I felt everything was ok. I felt peace like I have never felt before. I came to again, the medics were trying to suction me, I inststed on doing it myself! I was cold and uncomfortable but still no pain. Blacked out again. Kind of came to in the ER. I felt I was leaning over myself trying to give the nurses my Mom's phone number. I was telling the me in the bed the numbers, telling the me in the bed "take your time, you can do it". I remember feeling like I was watching things from up towards the ceiling, I didn't watch what they were doing to me, just watching them come and go. I remember floating down infront of a male doctor, hazel eyes, brown hair, beard, moustache, about mid 30's. I looked at his name badge, though now I can not remember his name. I can still see his face to this day, though. After that, back to the peaceful twilight. I do not remember seeing any one there with me, not God, Jesus, or any departed family. Just the peacefulness. I was in that place for nearly 6 days. I woke up, knowing I was in a hospital, still no pain. Some how I knew my baby and the older girls were still alive and ok. I put the call light on and asked for a pepsi and for some one to wash my hair, which was still full of blood and glass. I later learned that though I was with my ex at the time of the accident, no one told him which hospital I went to. My family had to hunt me down and when they finally found where I was, the docs told them I would not make it. The police who spoke to my Dad said that had I panicked, we all would have been seriously hurt at best, said the way I handled the car, based on witness reports and accident scene, saved my childrens life. The baby had only minor scratches, the 4 year old was fine, and the 6 year old only had a gash on her forehead from flying debris. Ex had a scratch in his left eyebrow. I had a traumatic brain injury, a cerebrospinal fluid leak, a broken nose, dislocated jaw, broken upper and lower jaw, broken bone in left hand, and the sinus's on the left side of my face were crushed. My face was so messed up, my left eye fell out onto my cheek, the eyesocket was destroyed. The repairs they did at first were done thinking I would not survive. They were to give me a chance, not done with cosmetic appearance in mind. I have a bit of titanium in my face now. Enough to set off some metal detectors.

So, some would say I cheated death. I say I was cheated. I miss that peacefulness. I have no clue why I did survive. I don't feel any special purpose since then. Things have not been easy..... I recovered quickly, was back to work within a few months, but I lost memories of my oldest childs baby years, didn't even recognise her in pictures, I have difficulty with memory, organization, concentration. Mom said my personality was different. Soon after coming home, I got angry with my 4 year old for something, and I lost my temper and spanked her, on the verge of child abuse! I felt so bad that I used every ounce of my energy to repress anger. I do it automatically now. This is not really a good thing, I know. Anger does serve a purpose. I basically allowed myself to become a door mat. I drained my own energy to the point where I do not defend myself. I turned it inward. And now that I figured out how bad that is, I can not undo it. Which is probably why I long for that peacefulness. I have been in counselling for over a year, it does not help with that. The counselling came after I over dosed. I don't think I was trying to kill myself, though I do think I was smart enough to know I could have because of what I did. I think I was just trying to get to that peaceful place again, which I did not, despite nearly dying. Where I went that time was confusing. I felt restless and empty. I did not have any peaceful feelings. I could not have told you who I was. I did not know my own family. I was just there, aimless. I hope to never do that again. So, I still repress anger, but I try to find safe outlets, like journaling (now blogging), the counselling, meditation, and other low key things. I wish I could get over the pain enough to ride a bike or even go for a long walk (I'd settle for a short walk or ride). And when ever I start to really want that peacefulness again, I think about how trying to get it felt..... how different it was when I went after it on my own. I wonder alot if the "fibro" is in part cause by the repressed anger. I used to doubt I had fibro at all, but now, I believe I do, and think I have for a long time, but I think it is definitely made worse by the repressed anger, which is made worse by having the fibro..... a big circle. I hope if any one who may read this ever feels so badly, that they get help right away..... even though I do not think I purposely attempted suicide, I think I knew it was a possibility, and if I had died, I think that the confusion, aimlessness, emptiness, and purposelessness I felt would have been the Hell I would have to have endured for eternity and I would not wish that on even my worst enemy (if I had one)!!! I don't know why I survived that incident (my family was told I wouldn't, once again) any more than I know why I survived the car accident, but though life isn't easy, I must live it and I strive to over come my disabilities until it is really my turn to leave here. And while I'm at it, I will try to make every day the best I can, maybe even manage to have a good time doing it!!!

I'm back

I have been sick for the last several days, some kind of upper respiratory thing. I've barely been able to get out of bed.

Things have been quiet at home these past few days, I guess the kids must have put thier bickering on hold while I was ill. My oldest daughter is now finding out about how difficult apartment living can be with a room mate who is not quite mature enough, despite being a full year older than my daughter. My daughter was visiting some friends and while she was out the room mate had a boy over, 16 maybe 17 years old, and things got loud enough that the police were called. No one bothered to tell my daughter about it, she is the person who signed the lease. I mentioned it to her because I thought she knew about it. Our city has rather strict rules about thier noise ordinance as well as rules about landlords whose tenants have frequent complaints made against them for any reason, except domestic violence. I know I should just mind my own business, I just don't want my daughter to lose this place and have to find another with a bad reference on her.

Today I am supposed to take my 18 year old to the bank to get her settlement from the car accident of 1998. It will be more than $50,000. I am really worried that her boyfriend and his family will take advantage of her. I am going to try to talk her into telling them she got half of what she really gets and putting the other half away in a certificate of deposit. This family is greedy. The boyfriends mom charges her husband for anything she does for him (which, in my opinion, isn't much) and on top of that, he hands over most of his money to her anyway. She doesn't work, has never worked, is on SSI, but she can go to bingo everynight! I can't even do that! Not even one night, sitting so long kills me, trying to pay attention to the caller is near impossible, and by the time bingo is over, I am so tired I can hardly drive home. I wish I had her disability rather than my own. The 10 year old twins get SSI, for what? For being "difficult"! She complains because they get up at 6 am, but she puts them to bed (with prescribed sleep medication) at 7 pm! She still bathes them herself (creepy), and does not let any one discipline them, not even her husband (their step dad since they were babies)! She even goes so far as to let them break her own rules if he tries to enforce them (except the bed time). And I think I mentioned in an earlier post that my daughters boyfriend also is on SSI for being a "difficult" child. He's 21 now and should be forced off SSI and made to work for a living! They have been chomping at the bit for this money, even took her to the bank soon after she turned 18. Thank God the account is in my name!!! The bank wouldn't even tell them how much the account was!

My youngest turns 6 on April 1. I have no clue what to get her. We need a new swing set, but since my grand kids would also use it, I don't think it would make a good gift. She has said she wants this and that, but I can't get her everything and choosing a few things is difficult. I guess I round up what she has said she wants and play "eenie meenie mienie moe" until I get to the budgeted amount. And her Dad can do the same with whats left!

My 15 year old wants a Limo to pick her up from school on her 16th birthday. She also wants a car. I think both are a bit out of my budget. She should work for her car, I think. My parents got me my first car, which I had to get A's in school for, but I can barely get this child to go to school. Maybe if I saved and got her a car, I could make it dependent upon her staying in school. My gut says let her work for it, though. A summer job might help her decide to stay in school so she can get a better job.

 I certainly decided to return to school because of the jobs I worked without a diploma. Had I worked befor quitting school, I may not have quit school in the first place! I liked most of the jobs I had, it was the pay that was discouraging. Even though minimum wage is much higher now, so are the other things, like rent and utilities and gasoline. I remember rent being around $500 (3 bedroom), utilities about $100 and gas was less than a dollar a gallon. Now rent is $770 for a place that needs a lot of work that the landlord won't do, utilities run about $200 to $300 (because of the work the landlord won't do) and gas is now at $2.90 a gallon. My first car cost my parents $350 and was road worthy for that price. My oldest had paid $500 for a car she was able to drive a month before the heater core went, a repair that would have cost more than the car. I could have fixed it for the cost of the $50 part if it weren't for the fibro and the arthritis.

Friday, March 12, 2010

Rough couple of days

Well, as if I don't have enough stress going on here at home, I've also been dealing with stress related to my oldest daughter, who is on her own now with her 2 children. She hes not been living with the kids dad for some time and their relationship has been on and off. His family does not like her and deny that the kids are his but he signed acknowledgement of paternity for both even though at the time of conception for each they were brokrn up. Anyhow, since she doesn't have a car, I had been taking her to get her child support payments from him, which also entailed taking him to pick up his pay check and taking him to cash it as well. I decided that this was not my responsibility, given that she could easily get child support collected through the support enforcement unit. He kept talking her out of it with threats that he would then file for custody and she would end up being the one to pay support. A few months after my resigning from the collection business, she finally decided to file for support enforcement services. I told her she should also go and file for custody that same day, but, of course she didn't take my advice and a month later found out the the same day she file for child support, he files to vacate paternity and also for custody (how/why can you want custody of kids you don't believe to be yours? The answer: to hurt the other parent!) And to top that off, he waited until 2 weeks before the court date to have the papers served and only then because she already knew about the court dates. Long story short (well shorter) the judge denied the request to vacate paternity because he said he had dobts even before signing the papers and he did not know anything now that he did not know then. The custody part was today and she now has custody, he has visitation (the kids can't go to his house where he lives with his mother because there is a history of violence there) every other Friday and every opposite weekend at either my daughter home or another place agreeable to her. She does not want to keep him from his kids, just from the rest of the family. His Mom denies them: no gifts on birthdays or Christmas, his siblings and step dad deny them even more. And they want to cause trouble. His Mom and one of his sisters are the people who served her the papers, at her job. They made a huge scene, "You've been served! Ha! You #$$#@@#". They made threats such that they let her leave work early but would not let her out of the building until I got there to take her home AND security walked her to my car, a whole 10 feet from the entarnce!!! I don't like to think bad thoughts about anybody, but these people push my buttons. The only consolation I have is that what comes around goes around.

Also this past few days, my boyfriend had his colonoscopy today. The doc found some polyps and sent a biopsy to the lab. I know they are probably nothing, but I worry. We have been together, and through hard times, for 9 years, and even though we don't live together, I consider him my husband, more than that...... my soul mate. I don't know what I would do with out him in my life. This is the only guy I have never had any doubt about honesty with. I feel completely secure, which is why I don't feel the need to push the live together issue. This is amazing because he is a huge flirt and if it were anyone else, I may think there is more to it than just the words. But he was like that when I met him and he never tried to hide it from me so it wasn't ever like it was any more than him just being a goof. And he trusts me as well. It is wonderful not having to explain why I did this or that, not being accused of stuff, but yet he is concerned enough to worry if I'm ok if I don't answer a text after a few hours.

So any how, after his appointment this morning, we went out to breakfast and we discussed my wanting to find a job. I explained to him that it wasn't the money, because I wouldn't be able to do anything that paid as well as nursing did and my SSD gives me almost as much as I got when I was working. He said he didn't think it was a good idea because of the pain from the fibro and the many stresses I all ready have in my life. He suggested maybe trying a volunteer thing. Thats a good idea, I think, but I also think that Social Security may view it as "If you can volunteer, you can work", since they did look into my volunteer activities as well as work activities when they decided my case. That was ok, since I stopped my volunteer work before stopping my paid work because of the pain and fatigue. At the time, I thought over-extending myself was what was causing my problems, since I was volunteering, working and going to school. Work was last to go.

I miss work..... I miss the residents, I missed being with many of them in their final hours. I miss making a difference (I hope). A lot of my co-workers were only in health care because it pays well. They would rush through the daily care with the residents, rarely talk to them and get to know them. They talked at them, trying to rush them. There were things certain residents could do for themselves that they (my co-workers) did for them because it was faster. To them, it was just a job. To me, it was taking care of family. Even the "difficult" residents got to my heart. I hated the paper work involved. It took too much time away from the residents. I hated when a resident moved or died because packing the residents stuff up (a responsibility that I don't feel belonged to nursing staff) took time away from the residents. Maybe my view of nursing is out of whack, but I got into it because I care about people. I chose long term care because I wanted to get to know the people I was caring for at a time in their life when thier family and friends may seem to drift away from them. I didn't want them to feel alone at the end of their life. Don't get me wrong, I understand the importance of writing in the chart, especially if there is a change, even a small one, but if it's same old,same old, why does it have to be written 3 different places that nothing is going on. I could understand it if there was a change in treatment or something where you may expect their might be a change, but just for the sake of writing when there are so many other things to be done? Nails to be trimmed and filed, a decent shave, a real bath or shower, time to put make up or nail polish on a resident who used to wear such everyday until they weren't able to do it for themself. I miss caring for them. I miss hearing them talk about days gone by. I miss helping them. I need to find a job that has that caring part and can also accommodate my disability. I get some of it just from being a parent, but I miss the oldsters. Every time I see an elderly person I miss my job.

Another thing this week, a guy I grew up with (Patrick) has throat cancer. He is a few years my junior. I remember when his mom brought him home from the hospital after he was born..... I must have been 5 or 6, I don't know, but when he got older, he was the baby brother I never had. I don't remember as much as I used to since the car accident had an effect on some memories, but I do remember my sister and I used to play with a bunch of other kids: Patrick, Tom and Mike, Nancy, Mark, Bobbie, Sherrie (Patricks aunt a few years older than me). We used to play on the whirlee gig we had in our yard, we played all different kinds of tag, kick ball, tether ball, baseball; stuff kids these days seem to want nothing to do with. We live in a small town where we could play outside even after dark and our parents didn't need to worry. We could walk to the corner store (or ride our bikes). Summer was great!!!! We played hard, got really filthy dirty and hardly went inside... only went in to use the bathroom or go to bed. I miss all that nearly as much as I miss working. So any how, this guy was cut from under his right ear all the way past the center of his throat and also down his left forearm because they had to remove his larynx and they used a blood vessel from his forearm to replace one in his neck. He had been through Hell, but other than all those surgical staples, he looked good, like he wasn't as ill as he really was. He's got about a 75% chance for beating this. I guess it started as a persistent sore throat, which he didn't think much of, since it was the season for such a thing and it was going around. Then there came the huge swelling on the right side of his neck, then the surgery. All of this within the course of a month or 2!!!! This guy is no saint, mind you, but he's really a good guy at heart and to have seen him like that was so hard. Despite not being able to speak, he was still making jokes to make the rest of us feel better. I'm not ready to lose another person I care about! I lost another brother figure in 2001, my Mom in 2006, not to mention all the people I worked with who have passed. I miss them. But I also envy them, having had a near death experience myself with that car accident in 1998 (Hmmmmmm....... a good thing to write about some time soon.) It wasn't the "light at the end of the tunnel" experience, but it was not unpleasant. I guess the not wanting to lose some one thing is rather selfish of me, on one hand, but on the other, Patrick is still a young man, he still has a lot of living to do...... his kids are teenagers (a son and a daughter). He has the high school graduation of his kids, thier getting married and having kids of thier own, so much more to experience..... I hope he is within that 75% that make it through something like this....

Well, I guess this is it for today. I know to stop when I can no longer be sure of my spelling (usually not an issue for me, I am usually an excellent speller, but sometimes my brain seems to forget that...)

Wednesday, March 3, 2010

empathy from family members

My oldest daughter moved on the 1st. Thankfully, my only job was to babysit my 2 granddaughters, ages 1 and 3. They were so good for me that I enjoyed my time with them more than I thought I would.

My 15 year old daughter helped with the heavy stuff and was still so sore yesterday that she could hardly walk. I told her that the pain she was feeling is much like the pain I experience nearly every day. She said "My God Mom! How do you deal with it?" I told her that my medicine helps a bit but sometimes you have to suck it up and deal with it. I also explained that that's why I need their (her and her sister's) help. I tried to explain how the fatigue felt but that wasn't so easy, since she wasn't experiencing that. I know soon she will forget how it feels to be in pain  and I will be thought of as a nag when I ask her to do something extra, but thats a good thing, in a way. I don't want my children to be in pain.

It's nearly time to set our clocks an hour ahead. I hate that. Sleep is difficult enough, sleeping when I should be awake and being awake when I should be sleeping. Time changes make it worse. Why can't we just get rid of that out dated ritual. After all, we can now light up a field in the middle of the night and make it brighter than day light, most people can light their homes similarly. We no longer need to bounce the time back and forth in order to get more work done. I think we temporarily lose some productivity while we get used to gaining or losing an hour.

On a different note, my 5 (almost 6) year old has been acting up lately. She purposely pesters her 11 year old sister to the point of near insanity! I know the sibling stuff is normal but this is the worst I have ever seen, and I have 4 older children, so I have seen a lot! This child stood behind me on the couch and spit on my head! All because I could not immediately help her with a computer game she was playing. I think most of her behavior issues come from her high energy levels. On the plus side, I don't have to do much to get this one awake and ready for school. "Time to wake up" is all I have to say and she's ready to go where as the 11 year old I have to loudly say "Get up!!!!!" many, many, many times and she still moves slower than a snail. They are chronically late for school because of it. I could wake her up early and she would still make everyone late! She needs an alarm clock louder than a jet engine that will also pick her up out of the bed. And as long as I'm wishing, it could also get her dressed and ready for school, which, by the way, she is an Honor Roll student in.