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Discussion Starter · #1 ·
Hi all,

I had my 2nd round of Cytoxan 11 days ago. I also had 1 gram of pulse steroids with the infusion. I did not rebound nearly as quick as I did the first time or at least I don't think I did. Some of the side effects of chemotherapy are the same as the symptoms that led to getting chemo in the first place.

The next thing that occured was that last week Tuesday, Wednesday and Thursday I had to get up early to make sure my son got off to school. My husband usually does this job but he had a teaching job for 3 days that had him leaving the house long before son goes to catch the bus. My hat is off to the mothers here who are getting up every single school day to get their children off to school. I really don't know how you do it. The first day was fine and I managed semi ok, mostly by vegging in my recliner. I also had to take care of dinner all 3 days as my husband was prepping for the next day each night. Fortunately I planned the meals ahead of time and kept everything as easy as possible. My son helped as much as he could. By Thursday I was totally thrashed. Looked forward to the weekend when I could just relax.

Friday wake up to hot weather. News said that the heat wave would end by Sunday evening. Here it is Sunday evening and no relief. Now the news says the hot weather will be with us till Thursday or so. My husband as bought a room airconditioner for the room I am in now. It is my sewing room and also has my computer. I will not let him put it in until the weather cools down. Not sure the actual numbers but I would bet it was in the high 90's yesterday and low 90's today.

Life with Lupus is always interesting but not always fun. Just wanted everyone to know why I have been so quiet lately.

Karen
 

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Hi Karen,

I am so sorry that you are not doing well. I too live in Southern Calif, Orange County, and I am in Foothill Ranch and it is so hot and all my symptoms are having a field day.

I also wonder how our lupus moms manage it all. My lupus began when I was 52 and my daughter is on her own. I don't know how I could have coped with being a single mom and having lupus.

Karen, I hope you begin to feel better soon. You are such an inspiration for me. I look forward to your posts. They are always so informative and caring.

Take care,
Susan
 

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Hi Karen,

Sorry to hear you aren't doing well. That heat wave hit me too. I can't imagine how much worse it had to be for you after your treatment. Hopefully the sea breezes return to give you some relief.

Take care,
Lazylegs
 

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I am very sorry to read about these new difficulties and hope too that the temperature falls very soon. It is hard enough to endure when not especially ill.

Many hugs
Clare
 

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Karen,

I hope you feel better very soon. I understand extreme heat, making you feel even more ill.

I am glad you will have relief, with an air conditioner.

Feel better soon.

Sandy
 

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Dear Karen

I am so sorry you are not feeling well these days(((hugs))).I do used to know what it was like getting kids up and getting myself ready for work as well as getting them up for school.I always felt like i was exhausted even after 5 to 6 hours of sleep but did not know why i felt like that just figuring i was working to much as a janitor for elementry school.Si i know what you mean having to get up but now i just have to take care of myself and somedays thats hard enough.So my heart goes out to these parents in here or anywhere that have lupus and have to take care of little ones.

I cannot imgine not having air in the house Karen b ut i know you do not get that many days like that and sure hope it goes away soon for you(((hugs))).I sure hope your new meds start helping you more also.Sure hope you get feeling much better real soon.

Tammy
 

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raggedyann, i hope that you get some relief soon, and that the heat wave subsides very soon.

wishing you well,

lydia
 

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I hope installing that AC becomes a top priority this weekend. It has to be miserable to endure that kind of heat for a few days, much less nearly a week.

We've been unseasonably cool in the Midwest but our hot humid weather is just around the corner.... :(
 

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Hope you feel beter soon Karen.

I've been putting a list up on the fridge of my meals each day - that way I make sure I eat everything in date and don't have to think about it too hard.

Hugz to you,

Pam xxx
 

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(((Karen)))

I am sorry to read that you are not feeling very well.:(

That hot weather is really hard on a person. I hope your husband can get your air conditioner put in soon. You will be amazed at the relief that you will feel.

I hope your new meds get you to feeling better too.
Take care Karen,
Love,
Lyn
 

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Karen,:hug:
I am so sorry that you are suffering. It has been sooo hot here too. It does seem to make things worse. My daughter is old enough now and when she was young-I was much better, but I can understand and feel for you. I hope you feel better and that our weather cools.:)

Hugs,
Becca
 

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(((((((((((((karen)))))))))))))

I hope you feel better soon...I will keep my fingers crossed that you find some relief from your treatment very soon & that the temperature drops to a more comfortable level.

take good care
:hug::flower2::foryou:
love karen x
 

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Sending you healing (((vibes)))

I hope you get some relief from the heat and are feeling better soon. Feeling lousy AND heat/humidity are not a good combination!!

Growing up, we never had an air conditioner..I didnt know what I was missing. Since being married and having one, now I couldnt live without it!

Sharon
 

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((((((((hugs)))))))),
The weather is just crazy these days, I hope the heat breaks for you soon. I hope the installation of the ac goes quickly and smoothly. Ceiling fans are nice too, if you don't already have one.
I hope you continue to recover from the chemo, that plus the heat is just too much for anyone I think.
I sympathize with getting your son off to school in the morning, I have 3, each in a different school and have to drive them all, let me tell you, it is no fun:(. I fix supper every night as my husband is "cooking illiterate :hehe:", seriously, he can not boil water. I try to prepare meals in stages, fix a salad in the early afternoon, rest, fix dessert, rest, then after I have retrieved the children and rested, do the main dish. It works o.k..
 

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Karen, quiet is good when you're dealing with such difficulties. You're right, getting up and getting the kids out every morning is taxing. I always got up, made a hot breakfast and had it on the table for the boys before school. They ate and got ready and I got them to the bus on time. When I got sick, that routine was one of the first that had to go. For some reason, that last few hours of sleep in the morning are worth a good bit more than the stretch that comes at the start of the night -- at least for me.

I saw the heat warnings for Phoenix and wondered it it would hit Southern Cal. too. Nasty stuff. Do try to pamper yourself as much as possible and "keep your inner core cool." I hope you get past this rough spot and get some benefit from your treatment. In the meantime, be gentle with yourself and don't worry. We all know you care and would be here if you could.

Karen, together with a few of the other mods, are the heart of this board. You keep it going as a community, more than just a meeting place. I, for one, have given thanks many times for your friendship, information and caring. Thank you. I know there's no pay in what you do here, but surely there will be "pay" in heaven for you and others who give so much of yourselves to the rest of us.

Love,
Sunny
 

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Karen,

I, too, live in southern California. I'm down in San Diego County and that recent heat wave put me in bed! I can't imagine having to have chemo, take care of your son (my little boy is all grown up) and deal with that heat. I sure hope you're getting some rest and that you get that air conditioner in real soon. My son is getting married this year and trying to keep the lupus under control with the stress from all of the wedding stuff and the heat is hard to say in the least. We finally had to get air conditioning put in a few years ago. My rheumatologist at Scripps told my husband that I would be sick all summer if I couldn't get out of this southern California heat. Anyway, I hope it stays cooler and that your new treatment starts helping you feel better soon.

lilacgirl
 

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I'm really sorry to hear that things are so difficult right now - all hot and horrible to boot.

Personally I found the fatigue and general sense of unwellness that I experience while I am having cytoxan is worse than anything that lupus can throw at me. It's hideous stuff, and only gets worse as the treatments wear on (in my experience anyway, I have had three series of it).

hope you feel much better really soon

hugs

raglet
 

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Discussion Starter · #19 ·
Hi,

Thank you all for your well wishes. By the time the heat wave was over I was just totally unwell. Of course by the following weekend it was cold and drizzly. My body didn't like the sudden swings in temperature and humidity. My severe joint pain also came back and it hasn't let up too much since, especially in my hands. That is why I haven't been around. It hurts to type. My hands haven't been this bad in over 5 years. In fact it wasn't till my hand pain was under some control that I started googling Lupus in March of 2003.

Hopefully I will get pulse steroids with my chemotherapy on Thursday. That should get the pain in my hands back under control. My feet are not as bad as my hands which is the reverse of normal for me.

Karen
 

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Dear Karen

I am sorry you are going through so much these days, really suffering which isnt' a word we use much for some reason, and hope very much that the Pred will help especially with the hands so so you can be back with us and be able to enjoy your hobbies and normal activities
I am keeping you in my prayerful thoughts

I hope the IV goes smoothly

Hugs

Clare
 
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