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1/31/2009

"Jeanne's Endo Blog" Is Offline Indefinitely (Starting Now)...

All,

I averted a trip to the emergency room last night, despite medical advice, but I need to go 100% offline immediately.

Since I don't want anyone worrying or wondering where I went, I decided to post this message.

I do not have the time or energy to post messages anywhere other than this one blog post.

I will not be online on any of these:

  • This blog or any other (neither reading nor writing, neither blog posts nor comments)

  • Facebook

  • MyBlogLog

  • Twitter

  • The www.icarecafe.com site (internal email messages)

  • Email


I will especially need to avoid email!

If you would like to message me something, PLEASE use this blog post. If possible, please wait until I get back online...

Please do not contact me using any of the above methods.

The more places I need to get caught up on, the more overwhelmed I will get. The more overwhelmed I get, the sicker I will feel. The sicker I feel, the longer it will be for me to feel better and get back online.

I apologize for any inconvenience and welcome you to read through my previous posts if you are a new reader who just stumbled upon my blog.

For loyal readers, please know that I will get in touch with you as soon as I am able. I really hate to do this. I would have preferred to direct message some of those with whom I communicate most frequently. I am simply too sick to be online at all right now.

I'm really sorry. I have reached the point where the only way to stay out of the hospital is to stay away from the computer. It is possible to get too much of a good thing.

Staying off the computer is key to me staying out of the ER until I can speak with my doctor Monday morning. I'm guessing it will most likely be a week or more before I get back online (at the earliest).

When I return online, it will only be for very brief periods of time to catch up on moderating comments to this post. I will not have time to read ANY other emails. So if you have a message for me, please do not email me or contact me any other way besides posting a message to this particular post.

Once I am feeling much better and once I have enough energy, I will start by moderating comments for this post (GRADUALLY) first. In time, I will get to the comments that are already sitting in moderation.

Jeanne

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

19 comments:

Yaya said...

Don't want to overwhelm you, but just wanted to send (((Hugs))).

Take your time in getting better and I'll be here when you're feeling up for it!

MaxJerz said...

I'm just sending hugs to you, Jeanne, and lots of feel-better vibes. Hope that things get resolved for you soon.

hugs,
MJ

Jasmine said...

You get the rest you need Jeanne.

Mistress of the Black Rose said...

Take care of yourself, and get well soon! Thoughts, prayers, and positive energy is with you from here!

Amanda said...

Oh Jeanne I am so sorry to hear you are so ill and just wanted to say I am thinking of you and sending my love your way. Take it as easy as you can and be kind to yourself.

With love
Amanda x

Jeanne said...

Jeanne's readers,

Jeanne is too ill/tired to reply individually to comments submitted but she asked me to publish the thoughtful well wishes that have been left here.

I'm not that familiar with the Blogger program Jeanne uses to moderate comments. So I may have missed some - but I tried to publish all of the comments to this particular post.

As Jeanne wrote earlier, other comment replies will need to be on hold until after she gets caught up. She isn't sure when that will be.

Jeanne's email gets full quickly so she asked me to post this message to let readers know she is aware of your well wishes and really appreciates everyone's thoughtfulness.

Thank you,

Jeanne's husband

Jannie Funster said...

Just hugs and love to you, Jeanne. Now and always.

Maureen Hayes said...

Take care of yourself and know that prayers for you are being lifted up

Jeanne said...

Jeanne's readers,

Jeanne asked me to thank you for the thoughts and prayers.

She really appreciates your thoughtfulness and is getting some well-needed rest.

Thanks,

Jeanne's husband

Belinda Shale said...

Thanks for the info Jeanne

Take care and hope you get you energy back very soon

Belinda
the icarecafe

Kelly D said...

Thinking of you. Hope you are feeling better soon. Rest.

Alex said...

Jeanne,
Just wanted to let you know you are in my prayers!!! I hope you are getting your rest and will soon be feeling much better! Take it easy, take your time, and keep that chin up. You are a strong woman and always taking care of all those around you... wish we could do that for you in return! For now though, I'm sending you lots of hugs and healing vibes!!!

Jeanne said...

Jeanne's readers,

Jeanne is still feeling very sick and very exhausted. She is looking forward to getting back to the blog as soon as possible but it's still unclear when that will happen. She really appreciates the thoughtful comments very much!

Thanks,

Jeanne's husband

Liberty said...

Dear Jeanne,

I'm SO glad you are doing this to take care of yourself. Absolutely no need to reply :-)

Thank you Jeanne's husband for letting us know you're reading these well wishes to her :-)

If any part of the problem with the computer is due to MCS, I would be happy to share, by phone if you prefer, the set up that has worked for me (I have severe MCS and can't be in the same room as a computer).

Many blessings to you both and once again, I'm so glad Jeanne that you took this self-care step and there is NO need to apologise!

You are setting a great example for readers of how self care must come first.

take care,
Liberty

Jeanne said...

Liberty,

Hi there! It's Jeanne. Yes, my husband has been very helpful this past week. It has been a very rough week and I am exhausted!

I will very definitely have to take a careful look at how I have been blogging because I am beyond burned out. I'm hopping online tonight for a bit but by no means am I returning to my "old ways". I have been pushing myself WAY too hard!!

Last Friday night I had a severe adverse reaction to a medication and the on call doc wanted me to go the the emergency room. He said "go" and I said "no".

In any event, I made it through last weekend but was very relieved to be able to talk to my own doctor Monday morning. He called in a prescription to replace what I had been taking. Going without medication even for just a couple of days did not help matters any. It'll take awhile before I'm feeling anything resembling "normal", I'm afraid.

It's a very long story. let's just say that the reaction I had had the potential to be fatal. Going without the medication without a replacement was just as scary. So last weekend seemed to last forever.

So I'm getting used to my medication. In the meantime, I have my period, I am in severe pain, my fibromyalgia has been just terrible this winter and my Reynaud's Disease has been worse this winter than ever before.

Even with 3 pairs of gloves on, my hands quickly feel frozen if I have the nerve to go outside. The temps have gone subzero in the last couple of days and this doesn't help.

This is all the tip of the iceberg but you get the idea.

I saw my primary care doc yesterday. I really didn't want to tell her my newest symptom because I knew it would prompt her to refer me to the gastroenterologist for a 4th colonoscopy. (I had a foot of my colon removed in 1996 due to a malrotated colon/paraduodenal hernia and I have had diarrhea since the early 1990s).

Anyway, I am now booked to see the gastroenterologist this month because I'm having cyclical rectal bleeding (a few days before periods and throughout periods). The new symptom is that I was passing blood clots rectally mid-cycle in January when I went out of town and got very ill.

While my rectal bleeding happened a few years back for 18 months and my 3rd colonoscopy found no explanation (i.e. I'm sure it was endo-related), I've been having the rectal bleeding each month now for about 5 months. The blood clots scared me enough to realize that I can no longer wish a 4th colonoscopy away.

The colonscopy itself is no big deal. In my case, the bowel prep always makes me very, very ill.

With my 1996 bowel resection surgery, I passed 4 kidney stones in 2 days directly following the ingestion of that bowel prep. Needless to say I will be letting this gastroenterologist know that I cannot take that type of prep.

So I'm falling apart lately and need rest. I'm trying my best to get the rest I need. I have gone longer without blogging than ever before.

I still need much more rest, though. I will need to get back into blogging very, very gradually.

So I know I'll need to be very careful not to jump in and start blogging like before... I can't overdo like that again. My body just can't handle it.

I must say that you have piqued my interest on how you're working your computer. :) It sounds like you are very creative.

It's very nice to hear from you!

Take care!

Jeanne

Liberty said...

hi Jeanne,

My absolute empathy to you for what you've been through!
I can only imagine how draining that would be and I hope you are resting as much as possible.

I understand the need to back off on blogging - to pace yourself.
I had to face that when I started just short month ago. I've come to accept that my readers may not get more than a post a week (sometimes less) and that my replies to comments sometimes need to be very short given my energy.

It's not how I'd like to be doing it but if I waited for that to be possible, it may never happen at all!

I hope that you can find a balance with your computer time that feeds your soul and does not drain you.

When my adrenal or thyroid systems are stressed, I have Raynaud's symptoms very badly but when they aren't, I am totally fine - can even put my hands in cold water or shovel snow till my hands are almost numb and not have an attack (ack!).
I know we are all different but I can't help but wonder if lessening stress, pushing yourself less hard may be able to help some of the symptoms you are having. I hope so!

re: colonoscopy
on a Yahoo group for MCS that I am on, there has been much discussion of how badly people react to the prep for that. Apparently Dr. William Rea suggests using magnesium citrate for people with MCS. (actual magnesium citrate - not the citra mag from pharmacy) but no one mentioned doses. most people react horribly to the Go Lytely solution but then there were a few who react fine to it but horribly to the other things. It's really hard finding something that is safe but I hope you do.

~

re: easing back into blogging.

I encourage you to take as long a break as you feel you can before returning! I know that can be hard if you are used to doing it so regularly. I hope that you in NO way feel you are letting anyone down. Self-care is never that! it is good and I'm sure we all want you to do that!

Please, please do not feel any need to reply to this comment okay? Please :) I didn't say anything that needs a reply and don't like to think of you typing/computering unnecessarily!

sending many healing thoughts and prayers your way Jeanne

take care,
Liberty

p.s. my computer set up is:

computer in one room I don't use, wires for mouse/keyboard/monitor come through a hole in the wall to the room I am in. Monitor is LCD and has NO vents anywhere on it. it has an external power supply that plugs into it which removes the need for cooling vents (which can also outgas chemicals from inside the monitor). This means the monitor itself barely gets warm so is not outgassing plastic or other VOCs.
It works well for me and the few others I know who use this set up.

Jeanne said...

Liberty,

I am so, so sorry for the delay in posting this and replying. As you may have noticed, I like to write customized, individual replies to each blog comment.

Since your comments are always so awesome and jam-packed with info, it has taken me a bit longer to post yours than I would have liked! Thank you for your patience!

I appreciate your support! The last few weeks have been interesting to say the least! I am still drained and my sleep schedule is still very messed up. (Wide awake at night and sleepy during the day). :(

Yes, I had to back off of blogging for awhile. I was setting myself up for the hospital being a given rather than just something the on call doc was advising me to do. So I'm glad I made it past that but I still need to watch it.

I know you had gone through your own period where backing off blogging was necessary.

I wish I could restrain myself and just post weekly. I'm sure it would be healthier for me. I have SO many stories I want to post about that there have been times that I even posted more than once on the same day. I know this seems excessive.

Part of my problem is that I'm blogging about so many differeent chronic illnesses that it's very hard to keep up with everything.

I know I'm going to need to work on focusing my limited energy somehow, though.

You are smart to find a way to keep it weekly or less. Another part of my problem is that I seem incapable of keeping my replies brief too. (I am not known for being concise).

I hear what you are saying!

Yes, I need to find a balance... as you mentioned. :)

That's interesting that adrenal and thyroid issues affect your Reynaud's.

Without a doubt my adrenal system has to be going bananas!

While I have thyroid nodules (that have tested benign on fine needle biopsy), they are supposedly not affecting my thyroid blood tests. (I say supposedly because thyroid issues run in my family, I have long suspected I'm hypothyroid, and I think the blood tests aren't always quite sensitive enough).

I have a friend who was on the lower end of normal - as I am - and her doc put her on thyroid medication and her symptoms just cleared right up.

However, my endocrinologist was very opposed to giving thyroid meds without abnormal lab work to justify it.

So I live with the symptoms that I swear are early hypothyroidism.

This winter has been brutally cold and my hands have been bluish-purple a lot of the time. Hurts!

I know it might not seem like it but I have scaled WAY back on many things for the purpose of lessening stress. Unfortunately, my life is so jam-packed with stress that my body gets ticked.

I have to say that taking that time away from blogging was necessary BUT that I'm even more stressed out now, in many ways, trying to "catch up". I use quotes because there is no catching up.

I'm just trying to make a dent in it. I know taking more time off blogging now would just make me even more stressed out.

Ah, yes, the colonoscopy...

I can't remember what I already mentioned so here's the scoop:

have had 3 colonoscopies

have had a hemicolectomy (12" of colon removed)

had bowel prep for some of my surgeries too

So I have had about 6 bowel preps. I've had various types and they ALL make me very, very sick.

Did the MCS group you mentioned give any options other than magnesium citrate? Ironically, that was the one that made me the sickest of all.

I've had 11 kidney stones. Stones don't form overnight so I certainly don't think a bowel prep "created" them. However, when I took magnesium citrate in 1996 in preparation for my bowel resection/hemicolectomy, laparotomy, removal of endo, discovery of/removal of carcinoid tumr on appendix/appendectomy, I got REALLYYYYYYYYY sick.

I passed 4 kidney stones in 2 days! They had to admit me early to the hospital because I was vomiting for about 12.5 hours straight before they found me a bed. It was AWFUL!! I will never take that again. The prep definitely "stirred up" the stones.

Yes, Go Lytely makes me violently ill too. However, nothing was worse than the magnesium citrate for me.

When I do a bowel prep (start to finish), I can't leave the bathroom at all. About 95+% of the time, I'm sitting on the toilet with a big bowl in front of me for the vomiting. It's wretched.

The 5% or less of the time that I can manage to stand up, walk to the sink, and wash my hands... I lie on the bathroom floor with pillows and blankets until it's time to start over again.

I have learned that the pillows/blankets for the bathroom floor are the ONLY chance I may have to rest during the entire prep.

I see the gastroenterologist on 2/26 to figure out why the cyclical rectal bleeding I associate with my endo has escalated to rectal blood clots.

I had cyclical rectal bleeding for 18 mos starting back in 2000. However, I have never had clots with it. :(

So I reluctantly told my PCP the other day (reluctant because I'm scared of the prep since I have had such weird reactions to it... and I don't want a 4th colonscopy).

She, of course, wants the gastro to see me ASAP. So 2/26 it is. Not looking forward to it at all.

Yes, it amazes me that some people do these preps and it's just no big deal at all. It boggles my mind.

The gastro's receptionist (who was REALLY nice) had mentioned something about taking Miralax combined with Gatorade (for the electrolytes). I tried drinking Gatorade once and almost vomited. You know it had to be gross to me if I'd drink Golytely over it)!

I asked if Gatorade was the only option and she said yes (all about the electrolytes). Makes me wonder how Pedialyte popsicles taste and if they'd be comparable to Gatorade.

I feel like I'm going into the 2/26 appt ready to play "Let's Make A Deal" with the gastroenterologist. I may have to do the Go Lytely (which makes my stomach turn just thinking about it!

Your advice on taking as long a break as needed from blogging is sound advice. I only wish I felt like I could wait any longer. As it is, the backlog is messing with my head.

I'm honestly not worried about letting people down (not that it hadn't run through my head a week ago). No... my problem is that
skipping blog time at this point will just make me feel even crummier!

You are VERY correct about the importance of self-care! I ahve blogged about this in the past. Granted, I may not always practice what I preach! But I do fully recognize the crucial nature of self-care!

You are very thoughtful to remind me of the importance of self-care.

You are too sweet not expecting a reply to this loaded-with-info comment. :)

Don't worry. I waited to get caught up on messages until I was ready. So don't worry about me. :)

I'm sending many healing thoughts and prayers your way too, Liberty!

THANK YOU for the amazing comments you post!

Take care,

Jeanne

P.S.
That is amazing creativity in how you have your computer set up! Did you read about the new building in Phoenix with safe rooms for MCS patients?? I read it on the Canary Report:

http://www.thecanaryreport.org/2009/02/11/model-building-for-ada-access-opens-in-phoenix/

Speaking of the Canary Report, there's a new social networking site:

http://thecanaryreport.ning.com/

I would invite you to it but I don't have your email. I also have a badge for it right in my sidebar. So check it out because I'm sure you'll like it.

autoimmunelife said...

Jeanne, sorry it's taken me so long to get over here... I'm not even sure why I haven't yet. I wanted to let you know I'm sorry to hear how everything went, and I hope you are doing at least somewhat better now. I'm glad to see you back online in whatever capacity you are... I'm not sure if you are back up to full or not... but I'm glad to see you are posting and commenting again. Please take care of yourself!
J

Jeanne said...

J,

As you can see, I'm quite behind on comments moderation/email. Sorry about that!

You don't have any need to apologize! :)

Yeah, it's been an interesting 1-2 months! :(

I'm online again but I wouldn't go so far as to say that I'm "doing better". I'm very stressed right now! Quite overwhelmed with responsibilities in conjunction with Endometriosis Awareness Month!

I'm not back up to full at all. You'd never know it to look at my blog because I've been updating it like crazy. I need to slow down!

I'm posting and trying to keep up with comments but I'm posting comments elsewhere very little.

Thank you for the reminder to take care of myself because I have not been practicing what I preach AT ALL for self-care.

I am neglecting little things like sleeping and eating and that's not good!

So I'm trying to dial down a bit so that Endometriosis Awareness month doesn't totally burn me out.

I have a TON of commitments for March (guest blogging elsewhere, writing endo pieces for a book on endo, continuing with the media/petition campaign, hosting guest bloggers on my own blog for awareness month, etc.)

I'm exhausted already and it's not even March yet!

Thanks for reminding me to relax!

Jeanne

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