Ten on Tuesday!!!! 8-2-2011 Back to School

I am once again running to the end of the day.  It is 11:32 pm and I am honestly feeling like crap and have no idea what I want to do for my ten on Tuesday, but I hate not getting it done.  So as I sit here and type and ramble to try and figure out what to do, I ask myself what things can I write about?  What lists or what groupings of things will make sense?  Honestly, my brain is not functioning and my head is hurting so bad, I can't even begin to get my head around anything.   But it hits me.....  It is back to school time, and what makes this time of year so hard on people with chronic pain diseases, well let me tell you-----
1.  Clothes Shopping-  This is a disaster. I am not sure how it is for you, but I have a teenage boy, who hates to shop, especially with mom.  So the stress of fighting to get him out, then finding stuff he likes, I can afford, and then getting it, well lets just say, by the time I am done, I am beyond exhausted
2.  Sports-  Yes, it is that time again, the crazy school sports schedules.  Sports camp starts before school even begins.  Football camp starts at 7 am, and of course we have to provide our own transportation, and my husband of course has to be at work at 6 am.  Ya, so the insomnia that keeps me up til 4 or 5 am and then I have to be out by 6:20 or 6:30 to make sure my son arrives on time, then of course the pick up which I am still not sure what time that is.  Ya, this should be good.
3.  Money- Finding the money, money for the clothes shopping, the sports equipment, the physicals, the school supplies and god knows what ever else they decide we need to pay for now.  Working on a close budget, that is one of the hardest and most stressful things for me.  Added stress, added pain as we all know. Worse of all, It may come down to choosing between money for sports and money for my own meds, and of course the sports will be priority.  My kids will not go without!
4. The List-  We all know the list..... the list sent home from the school, if you are lucky, mailed prior to the beginning of school, but often sent home the first day of school, with all the supplies needed or requested by the teachers for the child or children to have for each class.  Always specific items and nothing else will do.  And of course then you have to hope and pray you get to it before the store is sold out.
5.The Routine-  Getting everyone back onto a regular schedule, and out of the relaxation of summer.  It will no longer be the days of when it happens it happens.  Bedtime is bedtime, dinnertime is dinnertime, homework must be done, showers need done, you must wake up with the alarm and catch the school bus or walk to school and be there on time.  Summer is when you can sleep til you wake, slowly fall asleep when you are tired, eat when it is done.  Those days will have to wait again until next year, rigid time constraints will take their place.  So now, when you feel like crap, you can't say, it can wait a few minutes, because it can not, there is a schedule that needs followed.
6. The Struggle-  The struggle to shove all the last minute fun stuff into the few fading weeks of summer.  The days at the park, pool or beach.  The last minute vacation to see family or friends.  The water park, the mini golf tournament you promised, the movies, or what ever fun family thing you always did that you have not yet completed for this summer.
7. The Closet- Yes, we all know it has to be done, and we all dread it.  But seriously, if you don't clean out the closet, you won't be able to put the new clothes in, nor will you know what you have that still fits.  The summer stuff that can still be worn.   Of course, this will be a battle, and entering a child's room, especially a teen's room, could be in it's own right dangerous to your health, (lol), but it should be done, it will save your sanity, and hopefully a few dollar in the end.
8. The Company- I have to say back to school it bittersweet for me.  I believe it is the same for many parents.  Being an at home mom, especially one with limited abilities due to chronic illness, having someone home with me all the time is pretty nice.  Yes, he is a 15 year old boy, he is often hiding in his teen cave aka bedroom, but if I need him or he is bored, we hang out.  We do stuff together when I can.  When he is back at school, I am all alone in my house.  If I am in a totally incapacitated state, which happens often, I am stuck in my room with no human contact and I know he won't be popping in.  I love that he is back with his friends, he is active again, but I will miss the company.
9. Early Mornings- I don't know about others, but I am horrible in the morning.  Since I sleep like crap most nights don't fall asleep until the wee early hours of the morning, waking up at them is horrendous.  Also, on the amount of meds I take, once I sleep, waking up, is horrible.  I feel really drugged and not safe waking up and dealing with mornings.  I hate that my son has to get up on his own and get ready, I know he is 15, I understand he is old enough and needs to be responsible, but he is my baby, and it eats at me.  How do mom's with little one's deal with this?
10. The Yes I will Syndrome-  and so it begins.  The torture of the fact that I love to help, even when my body says there is no way in hell that I can.  Yes I will help with the fundraiser, yes I will help at the football concession stand, yes I will make something for the bake sale.  See, I have never ever been able to say no.  I hate doing it.  I know, physically I can not do the stuff I say I will.  5 years ago, I could, of course I was slowing down even then.  10 years ago, I was running the PTO, the soccer club, a basketball mom, helping with multiple fire company fundraisers, and bake sales, and I was also on the March for Dimes Committee for the Walk for Babies for the city I lived in and handled the food at the end of the walk for multiple years for over 1000 walkers.  Can I do that now.  Only if I wanted to be in bed for weeks afterward.  See, I have to learn how to say no, but how.  I want to help, and I want to be able to do it in the capacity I used  to be able to.  But I can't .  The Yes Syndrome is the hardest for me.  I have to learn to tell them what I can do, within my limits.  It is the only way.
So the start of the school year, the end of summer is very hard on me, and I believe on all the other people with chronic pain, or chronic illness.  I find it very hard to deal with, since I am a fighter.  the only issue is I fought so long, that I am in severe pain all the time now.  I fought against the pain, pushed myself no matter what pain I had, that my body was shutting down to the point I would pass out. I had for so long pushed the pain away, or fought it, the pain was so bad, my body was doing what it had to did to kill the pain.  What it did was shut down and I would pass out.  Now, I am not passing out as much, but I am feeling the pain.  who knows.  All I know, is once we get through back to school, all we will have to worry about is that wonderful time of year , CHRISTMAS!!!!!  GOOD LUCK!

Just simply waiting..... and waiting......and waiting......

If we are not all to aware of constant waiting.  Go to the doctors for an appointment and sit in a chair, an uncomfortable one at that, and wait.  Of course way past the time we should because I don't know many doctors that run on time.  We go to the pharmacy to get medicine and hope they are done, after waiting in line to pick them up, is it ready, if not we have to wait.  We call the doctor to tell them the new medicine is not working, the old medicine has stopped working, the pain levels are higher than usual and we wait for the phone call back. We take the pain medicine and wait for it to work, we go to bed and wait for sleep to come and the important of them all we are all just waiting, and of course praying, hoping and dreaming, of a cure.  

My wait today is a combination of many of them.  I had to call the neurologist today, again reporting the attempt at removing from the nortriptylin and not replacing it with anything is yet another failure.  I am no longer constantly feeling as though my head is swimming and every time I stand up I will pass out, but, my migraines and hemicrania continua that has been under much better control, has become horrific again.  I am not sure how  many of you have migraines.  I have suffered from them since I was eight.  Then about 10 years ago I started with a constant headache and nothing that ever helped my migraines took it away.  It took almost 4 years to diagnose because it is a rare condition, but then on top of migraines, they discovered I suffer from hemicrania continua.  This is the definition 

Hemicrania continua is a chronic form of headache marked by continuous pain that varies in severity and always occurs on the same side of the face and head.  Superimposed on the continuous but fluctuating pain are occasional attacks of more severe pain.  The headache may last from minutes to days.  Symptoms fall into two main categories: autonomic, including runny nose, tearing, eye redness, eye discomfort, sweating, and swollen and drooping eyelids; and migraine-like, including nausea, vomiting, and sensitivity to light and sound. Most patients experience attacks of increased pain three to five times per 24-hour cycle. This disorder is more common in women than in men. Physical exertion and alcohol use may increase the severity of headache pain in some patients. The cause of this disorder is unknown.

There is two forms- chronic, with daily headaches or remitting, which means you will have it for 6 months or so it will go into remission and then occur again.  I of course have the chronic one, no break for me, lol.

So now, on top of the normal headaches and migraines, I have this to contend with.  I take a medicine called Indocin, which has made a huge impact on the pain, and helped regulate it.  It states in all the things you read that it is a great drug and usually provides total relief of all symptoms.  Well guess what, I am one of the not so  usual,  is that much of a surprise to anyone out there, ya me either.  I won't say it does not help, it actually holds it at a bearable stage most times, but I think also having other meds involved has helped alot.  Now they have taken me off of Cymbalta, because it is not a drug my isurance covers under it's formulary and I have to try all these older type meds before they will and I can not afford the cost out of pocket and my husband and I make just enough that we don't qualify for any assistance.  I have tried nortriptyline which screwed with my blood sugar, made me constantly dizzy and nauseated, even more than normal, car sick and unable to drive, so that when out the window.  So, now I have to try more in the list of TCA (tricyclic antidepressants) before my insurance will cover the one medicine that was working, the Cymbalta.  So it is just a constant waiting game, waiting for the doctor to call back, waiting to see what med it is this week, waiting to see if it works, and all because someone sitting in an office is better at telling me how I feel then just being willing to pay for a medicine that works.    Well, I guess such is life.  The funny thing is, the Cymbalta helped with my depression, the headaches, the fibro pain, all of it.  I do not have the ability to take narcotic medicines.  I have a crazy reaction to every one I have tried, so pain levels for me are always crazy.  Cymbalta helped with all of that.  They had to keep increasing my dose every 6 to 8 months as I adjusted to it, but that is with every medicine and I had only been on it a little over 16 months when my insurance changed and threw me into this mess.  So I guess I will just wait some more.  I have to thank God some days for being a semi patient person, because If I was not, things would drive me insane.  I will let you know what new and exciting adventure I embark on as soon as I find out.  Until then, have a good night.  

Ten on Tuesday!!!!! 6-28-2011

Ok, so I really wanted to get some cool Red, White and Blue recipes together for my ten on Tuesday since July 4th is quickly approaching but today is not a great day for me.  Headaches are bad and just not feeling that great.  Instead I am going to do a quick list of my favorite books to read or make that Authors.  I do a lot of reading so books become my get away.  I don't mean books about illnesses or the crap I go through every day, I have to deal with that, this is something I do to not think of that. Books I use to help me day dream or take my mind off of the pain and daily grind.

1. Nora Roberts
2. James Patterson
3. Stephenie Meyer
4. Catherine Coulter
5. Anne Rice
6. Richelle Mead
7. Dan Brown
8. Mary Higgins Clark
9. Sandra Brown
10.Katherine Stone

These are some of the authors I have read numberous books from.  Of course there are many others.  I am sorry for cutting it short, but hopefully in the next day or two I will get to add some fun recipes for July 4th.  I hope you have a good night.