[Rachael]

Hi Guys....ever had a day that you have had enough? The last month has been pain every day. My frusteration level is soaring wondering if this will ever be over. I want my bloody life back. I read storied if success and failure and wonder where I will land. Why does a person have to wait for treatment.
I can barely type and or keep my thoughts together. I am having a whiney moment. I wish others understood....but only here. Ugggg....encouragement please to pull me back from my slump??!!

[Donna7]

Yes! I've had those days! I'm sorry you're having one today, Rachael... Whining's allowed here, as long as we can all whine with you!

Maybe it would help to distract yourself for a while...when I start feeling overwhelmed and discouraged, I try to find something to take my mind off of it...like put my headphones on and listen to music, watch a movie, or play a (mindless) computer game, like Othello. Reading is usually too hard to concentrate on., let alone trying to hold or prop the book!

My husband made me a plastic card holder, so we've started playing cards in the evening...they bring the card table up to my recliner, and I prop pillows everywhere. It also helps take my mind off of things.

Best wishes to you...hang in there. Not every day will be this bad.

[johannakat]

Oh i DO understand. it sucks. Today after a week and a half of horrible wheezing and small improvements, my 18mo failed her chest xray.

Not pneumonia, but definitely something in there. In the middle of that, she had a throwing up all night sickness that is getting passed to the rest of us in turn. THe worst part about getting it myself was not throwing up incontrollably all night...it was that part where for 24hrs or so I couldn't take any pain meds. ack. Coupled wit the extra holding for the sick baby, helping the three year old when he got the throwing up sickness, and a week and a half of no sleep I am really hanging by a thread today.
Talked to my hubby this afternoon and it sounds like he is up for throwing up sickness tonight, so I know I am going to have to hold it together for the sick kids and my still ailing self.

came to work today and spent the whole day staring aimlessly at the computer screen....oops. I guess I got a little done, trying to finish one last thing so I can take wheezing 18mo to the pharmacy for the new meds. Even with that pressure I can't focus on work.......argh.

I know, these kinds of days are hard even on healthy parents. For me, the pressure that it is going to be weeks of backsliding on recent PT progress bc I have been doing things I shouldn't (holding too much of my sweet sick baby girl!! ) and not doing things I should (stretching, exercising, sleeping ) is just more depressing than I can entertain at the moment.

so, vent away!!!! I am sorry that you feel so lousy, it seems so unfair that we all have to be this way.

I really really hope that when winter is over it will be better. Sun and fresh air is so good for all of us. Even those of us in sunny CA get less in winter. (beacsue somehow 60 seems too cold...lol)

To better days ahead!!!!!

Johanna

[Rachael]

I appreciate the opportunity to whine. Joanna..my daughter went throught alot of this as a baby too. She over produced mucus which in turn made parts of her lungs collapse. It was a long battle but eventually was dx'ed with high secretion asthma. Not alot known on it but she did out grow it.

I get so frusterated hurting everyday. My day starts out fine, but by mid afternoon this major fatique hits and my arms start burning. 4 years to get a dx and now no one here will do anything or suggest how to live while I sit waiting for surgery. I am now up to taking pain meds daily and hate it. I am cranky cause I hurt and when I get cranky I get stressed and hurt more. A never ending circle it seems. I had steriod shots into thumb last week. When I went to O/T for the splint they couldn't believe that after 4 years I have never been to O/T for any type of help or assessment. What can they do for me? Anything?

Donna..it seems I can't find much time to really relax, between school and kids by the time everything is done I go to bed.

[Jomar]

Two of my boys had bad problems with recurrent resp infections /bronchitis type coughing and such.
I got tired of the same old codeine cough syrup & antibiotics - so finally took them to a naturopathic Dr and he interviewed us as to all symptoms and then did the exam.
Both had milk /dairy allergies or sensitivities and it was causing excess phlegm.

He Rx'd some homeopathic cell salts and did a treatment called Diathermy.

[Diathermy

Definition

In diathermy, high-frequency electrical currents are used to heat deep muscular tissues. The heat increases blood flow, speeding up recovery. Doctors also use diathermy in surgical procedures by sealing blood vessels with electrically heated probes.

The term diathermy is derived from the Greek words therma, meaning heat, and dia, meaning through. Diathermy literally means heating through.]

my boys had stopped getting fevers to fight the infections so the treatment made the body heat up internally.

It helped very quickly and then we avoided dairy products {milk , ice cream mostly } till they grew up a bit more and then they were fine.

[Donna7]

Rachael, so sorry...I'm not working, my children are a little older, and I took for granted you'd have opportunity to take a break from things. I hope you can find some relief, even with your busy life.

[johannakat]

Rach-
How old are your kids? Glad to hear your daughter grew out of the mucus thing. yes, respiratory infections suck.

I didn't take as long to get dx'ed as you, but in the past 4 mo I have also moved to taking pain meds every day. Like you- I wake up well and then get tired and cranky easily towards afternoon. Evenings are really hard and it is all i can do to fall onto the couch and catch a half hour of tv before bed. If I don't get myself unwound at bedtime with a few vicadin, I find that the following day is harder. SO I basically succumbed to the meds and I think I feel better for it. I try to also get in the occaisional epsom salt bath, but they are few and far between!

One thing I did recently and found surprising was just added a b complex vitamin and a regular multivitamin to my regimin. I never used to be good at taking stuff, but now that I do it all the time I figured why not...? They have really helped my general energy level. I didn't even realize, I just noticed one day that I had felt really good for about a week and had to think back to figure out why.

I really hope you find some answers. How much longer do you have in school? If I recall correctly you were putting surgery off until then, right? Have you taken advantage of the workers comp resources for laptop, voice software, and the like? Maybe you can find a way out of the four hours of sitting at a desk writing. I have thought about going back to school for a teaching or counseling degree or something, but I think school would be really hard right now.



give yourself a big pat on the back for doing so well with crappy circumstances, K?


best,
Johanna

[cindyj]

Hun we all know exactly where you are. We have all been there many times.I am 4 weeks post op now,I was on waiting list for almost 2 years. I have lived in this hell for over 15 years!! I have been on daily pain meds for 10 of those years.I raised 2 boys through it all, and worked until I physically could not work anymore. 2 years after i had to stop working, my hubby had a workplace acident and injured his spine.He waited 4 years for surgery and will neve work again. He has been home 24/7 for the past 13 years so I have a ton of extra housework lol. The one thing I had to learn was to live from this day forward.I was stuck in " I used to be able to do this and this",and " I want my life back" .It took a long time but i had to put those days behind me and start living from today. We also tend to get mad at ourselves for being depressed or cranky.It is absolutely ok to allow your self to have a bad day. You don't want to do this all the time because it will worsen depression, but my counsellor made me see that i needed to tell myself it was ok for me to havea bad day. If Ineeded a day to cry or scream or whine, it was perfectly acceptable to let myself wallow in it that day. It's a long road hun,a nd there are no easy answers. Try one thing for me and see if it helps.I know you dont have much time to yourself but this requires a 1/2 hour after your kids are in bed. Fill the tub, pour in some very relaxing bubble bath or bath salts, light a few candles in your bathroom, close the door and turn off the light, have a radio going or enjoy the peace. Soak for 1/2 hour.Make that time yours. It is a way to shut out the whole world for a 1/2 hour, it relaxes you mentally and physically., and it will help you to have a much better nights sleep because your muscles will be more relaxed. Try it hun, I think you will find it helps at least a little. take care, cindy

[Rachael]

Donna, I wish the girls were a little older, or even understood that mom doesn't always feel the best. They are 10 and 12.
I have never been offered anything in terms of councling (sp) or anything really. What I have done for myself are things I have leanred here. If it weren't for this site I never would have been dx'ed with the TOS. I would like to have my surgery now and get this over with, but the as Cindy said, the waiting list is long.
Thanks for all the words...there are just days I need someone to whine with me and actually know how I feel....

[Donna7]

Oh, Rachael! Mine are 9 and 12! I understand exactly what you mean. They've done so much to help...they fold the laundry, they load and unload the dishwasher when I ask them to, they make pies and bread and dinner. I feel sometimes they're missing out on childhood...but we do still have fun together! They appreciate my good days so we can go to the zoo or museum. We homeschool, which can be a monumental effort when I'm having a bad day...

I realized, though, that they're not deprived of much. Their childhood is just different than my older ones' (I have three older ones, too...2 of whom aren't at home anymore). It seems like it's working out okay. My husband and older son take them to their ballet classes if I'm not doing well, and everybody kicks in to high gear when necessary. They'll get through this; I hope they'll be stronger for it and appreciate their health. I hope your daughters will, too.