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A bad day


Mrs. Glass
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I have had a bad day today. I did not realize how much the florinef was working until the Doc took me off of it to get through the back surgery. My heart has been racing all day and my blood pressure can't make up its mind if it is going to be low or high. I have been so dizzy today that I wish that I could pass out just to get some relief. I see the surgeon on Tuesday and I am going to tell him to please do this surgery as fast as he can. I have to get back on my medicine. The bad thing is I am on Coumadin for a blood disorder and everytime I have to have a procedure or surgery I have to go off of it and risk more blood clots. But to get rid of this horrible pain in my back I am willing to take the risks. I know that one day I will get used to being this way, or maybe I just have to accept it, but today is not the day. Maybe I am on a pitty party, or something, but there are those days where I can't get past how I feel. I am always so fatigued that I can't even stand long enough to even do the dishes. So my husband does everything. The bad thing about it, is we had just bought a fixer upper house as a project for the 2 of us to work on. Now it is all up to him. Well forgive me for being on this pitty party. Does anyone else have days like this? I sure hope not! It's horrible. Vanesssa :)

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Hi Vanessa!!

Welcome!! I dont think I've seen you pop up before.. so Hi!! :)

Sorry that you are having a rough time.. I hope that your surgery goes allright.. and that you get much needed relief..

Hugs to you!

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Hi Vanessa

I am sorry to hear you are having such a rough time of things but unfortunately it sounds really familier. Just take it easy and look forward to getting back on the Florinef!!!

As for the 'fixer upper' house you in for the few minutes a week when the fatigue passes I found that painting lower bits really good both for actually getting things done but also it made me feel better about my self so not to put all of the work on my husband (not that he would mind). Now we have our jobs shared out well- I don't do much but anything that can be done with little energy whilst sitting on the floor is mine!!!!

Good luck

Katie x

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vanessa -

sorry that you're having such a rough time.

as others have said, you're definitely not alone. we each have our own versions of bad days but there are A LOT of similarities that many of us have in common.

i live alone & can relate to not being able to do the "little things" (like dishes). my mom is coming from out of town to clean my place this weekend as it is a disaster (i think i may get lost in a dustball) but i simply am not able to clean on my own these days. as for dishes, i have a stool but still only do a few at a time. i honestly can't even remember what it's like to do dishes standing on two feet!

hang in there....

:) melissa

p.s. sorry if i've missed your saying this already, but is there a specific reason you had to go off florinef for the surgery? i'm only asking b/c i was able to take it through surgery. we're all different so i'm not at all trying to second guess your docs but am just curious...

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Vanessa,

Just curious why you had to go off the florinef. When I had surgery twice while on florinef they had me stay on it, even increase it the morning of surgery to keep my BP up during surgery. Both surgeries went really well and I wasn't so hypotensive after.

Dawn

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Oh yeh just another note about being unable to clean, i feel quite dizzy cleaning the bathroom. 1 because of chemicals and 2 because to clean showers and around toilets you have to bend down and stand up alot. Im sure you all understand this. I get so embarassed when friends use my loo.... i know inside they are thinking how dirty it is. I usually usher them to the other bathroom that my mum cleans every 3 days or so but sometimes they beat me to it and i dont have a chance B)

I think my family think my chemcal sensitivties and inabilty to clean are just an excuse most of the time so i try not to bug them to clean my bathroom (every now and then i have to). This thread just reminded me its time to start bugging heh.

Sorry just thought id let you know your deffinately not alone in the lack of energy to clean department, as sunfish has already stated :(

*shuts door to bathroom to hide it from outside world*

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Florinef is one of those meds that I never notice a difference when I take it but boy, do I notice when I don't! Ugh.... I'm so sorry you're having to go through this in order to have surgery. Since Florinef helps increase pressure and maintain fluids have you considered increasing your fluid/sodium level during this time? Or, even see if you might could take an iv of lactated ringers to help get you through if the doctor wants you on no meds for the surgery. If that is a no go, condensed soup can help increasse sodium and retain fluid if you only dilute it a little and add a ton of saltines. This has been one of my "quick meds" many times. I can relate to the coumadin- I'm on heparin (do to my iv's!) so I understand the pain of working around blood thinners. I hope that the surgery you are planning for gives you some relief and you can get back on your meds pronto! Good luck!

Carmen

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Hi sorry I havent replied before now. Too many Drs. Appts. out of town. They took me off the florinef because the pain medication that I am on mixed with the florinef and the midodrine was causing my bp to rise to high. At least that is what they think. I see the Neurologist on the 30th. Hope my surgery is over and the pain pills are over, I want him to manage my meds. I think my Cardiologist is just guessing. But I will just have to hang in there until that time. ;)

Thanks Vanessa

vanessa -

sorry that you're having such a rough time. 

as others have said, you're definitely not alone.  we each have our own versions of bad days but there are A LOT of similarities that many of us have in common.

i live alone & can relate to not being able to do the "little things" (like dishes).  my mom is coming from out of town to clean my place this weekend as it is a disaster (i think i may get lost in a dustball) but i simply am not able to clean on my own these days.  as for dishes, i have a stool but still only do a few at a time.  i honestly can't even remember what it's like to do dishes standing on two feet!

hang in there....

B) melissa

p.s. sorry if i've missed your saying this already, but is there a specific reason you had to go off florinef for the surgery?  i'm only asking b/c i was able to take it through surgery.  we're all different so i'm not at all trying to second guess your docs but am just curious...

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Guest Julia59

Venessa,

I'm sorry you have been having a rough time lately. I found that drinking a V-8 is helpful + you get your veggies in. I do this before I go run errands or go shopping. Shopping these days have been difficult-----it's kind of out of the question mostly, but I have had days where I can go to one store like Target or something----depending on the day. It helps out a lot with the summer heat being gone. A 12 ounce can of v-8 has 880mgs of sodium.

I bet you will be happy to have the surgery over with----that will be one less thing to deal with----the pain-----------ouch---on top of everything else, that is definately something you don't need. I know what it is like to have both terrible fatigue and pain-------no fun at all-- ;)

Is Dr. Heffez doing your surgery?------I thought it was you who was asking some questions about him----forgive my terrible memory.

I hope the surgery helps improve some of your symptoms---of course there is never a guarantee. I showed some improvement---no doubt to that, but unfortunately I have additional issues with my spine, and there really is know way of telling at this point if it's my spine or something systematic that is causing a lot of my symptoms----this is still being investigated.

I know one thing that will go away----it's the pain----and that in itself is a blessing. B)

I hope you feel stronger soon-------take Care,

Julie :0)

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Hi, Julia

My surgeons name is Dr. Misenhimer. I saw him on Tuesday,and he said that I do definatly need surgery. His office is supposed to call me to set up a time to have it done. The one scary thing is that it is on an outpatient basis. That is the only way my insurance will pay for it. At this point I do not care if he does it in his office, I just want some relief. The pain pills are starting to upset my stomach, no matter how I take them. Hopefully they call me today. I have always had adverse reactions to meds. They may be ok at first, but then something happens and they start making me sick, or hives or something else.Thanks for the tip on the V-8, I will try it. Yesterday was so horrible that I just stayed on the couch all day. Every time that I tried to get up to try to do anything I would be so dizzy, and my legs felt like they were going to buckle under me. So I just layed there. Hopefully today will be a better day. Looking forward to no pain in my back or legs!

Hope you have a great day.

Vanessa :)

Venessa,

I'm sorry you have been having a rough time lately.  I found that drinking a V-8 is helpful + you get your veggies in.  I do this before I go run errands or go shopping.  Shopping these days have been difficult-----it's kind of out of the question mostly, but I have had days where I can go to one store like Target or something----depending on the day.  It helps out a lot with the summer heat being gone.  A 12 ounce can of v-8 has 880mgs of sodium.

I bet you will be happy to have the surgery over with----that will be one less thing to deal with----the pain-----------ouch---on top of everything else, that is definately something you don't need.  I know what it is like to have both terrible fatigue and pain-------no fun at all-- B)

Is Dr. Heffez doing your surgery?------I thought it was you who was asking some questions about him----forgive my terrible memory.

I hope the surgery helps improve some of your symptoms---of course there is never a guarantee.  I showed some improvement---no doubt to that, but unfortunately I have additional issues with my spine, and there really is know way of telling at this point if it's my spine or something systematic that is causing a lot of my symptoms----this is still being investigated.

I know one thing that will go away----it's the pain----and that in itself is a blessing.  :)

I hope you feel stronger soon-------take Care,

Julie :0)

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Hi Carmen

IV's are out of the question. That would mean that I would have to go to my local hospital, The last time I went there I was having a stroke due to my b/p going too high, and they treated me for a general headache. Gave me a shot of morphine and sent me home. My cardio was furious to say the least. He is in another town. I do not like condensed soup, but I do like saltines. Will try them. My problem is that I have not put salt on my food or in my food since 1974, and now it seems like I have to eat it all of the time. My cardio put me on extra salt, and then took me off. I hope that the Neuro has more answers for me. The biggest problem is no one in my area has much or any experience with this dreaded disease. But the one good thing is my Neuro said that he was going to be doing a lot of research on it to help me more. I tell you if I could I would go to one of the research centers like Vanderbilt just to find out all that I could about this. At least there they are not fiddling around in the dark. My cardio took me off of the meds for depression and anxiety and I tell you there are days that I wish that I just could have slept all day, but then I do not sleep so well anyway, even on Ambien I usually wake up anywhere between 2 and 4 am. NO matter what time I go to bed.

But it is another day, and I am going to make the best of it.

Have a great Day! :)

Vanessa (They call me "Mrs. Glass")

Florinef is one of those meds that I never notice a difference when I take it but boy, do I notice when I don't!  Ugh.... I'm so sorry you're having to go through this in order to have surgery.  Since Florinef helps increase pressure and maintain fluids have you considered increasing your fluid/sodium level during this time?  Or, even see if you might could take an iv of lactated ringers to help get you through if the doctor wants you on no meds for the surgery.  If that is a no go, condensed soup can help increasse sodium and retain fluid if you only dilute it a little and add a ton of saltines.  This has been one of my "quick meds" many times.  I can relate to the coumadin- I'm on heparin (do to my iv's!) so I understand the pain of working around blood thinners.  I hope that the surgery you are planning for gives you some relief and you can get back on your meds pronto!  Good luck!

Carmen

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