As most of you know mom, my brother and I all have had Chronic Fatigue Syndrome since 1988. One day my brother came down with “the flu”, then mom and then me. Since then we have never been well. I had a short lived remission when I was a senior in high school but it came back with a vengence (sp) when I went to be an exchange student in Sweden. I just got too sick and had to come home before I could attend college there.

Well, a very kind reader on Sunday sent me this article and then another sent me one this morning. (thank you Tammy and Betsy)
Here’s another video interview I found too.

It appears they have found the virus that causes this illness. Yeah!!! I admit, I’m not a sentimental person but I did have a tear or two reading it. For years people have thought we were just crazy and you begin to think that you are after awhile.

It’s funny because while I’m pregnant my CFS basically goes away but once I stop breastfeeding it comes back in full force. (hormones seem to make the illness worse for some reason) Well the last two weeks since I’ve been drying up from breastfeeding I have been so sick I can hardly do anything. A couple of evenings Mike has had to help prop me up so I could drink an Alka Seltzer and try and get some life back into me.

I have been so discouraged from my lack of energy and my lack of brain function that I have to say this just made my day (ok my lifetime!) to know that we are really sick and there is a reason why we feel like the walking dead most days.

BTW, I do believe that CFS and Fibromyalgia and two separate illnesses. I think they are related but mom and David only have CFS and I have both. When I’m pregnant my CFS all but goes away but my FM gets much worse (from lack of moving around while on bedrest).

So if you have CFS there is hope!!! Tawra

I just finished listening to the reports myself. We have heard for years if you drink this juice or take these herbs you will be cured. At first we were so desperate we tried everything but as the years passed we became a little wiser.

Every time a person would e mail us and say I have found the cure, we learned to take it with a grain of salt. I always said that when a cure is found it will be all over the news and not just odd people here and there. I said when it makes the newspapers and TV big time we know the cure is probably found.

After years of disappointments I am trying not to get too excited but I finally think that day has come. It is so weird because I’m not even sure what to feel. I have battled not only my illness all this time but other people and their not understanding or saying it is all in our head - most of our family members, all of our doctors- it is like I have had a sword and shield fighting, fighting and fighting and now there is no enemy. I can rest.

If I feel this way just getting the news of what it is what will it be like to have my illness under control. I’m not even sure how to react. I still need to be careful because the last time I got this excited I made my CFS flare up and got really sick. HA!HA! Imagine one day soon I can get excited and happy and not worry about the consequences afterwards (being sick for the next couple of days). Too cool!!!

Jill

I love collecting quotes, jokes and cartoons. Here are a couple I just recently found.

The first is a cartoon which my grandkids think is a hoot. It shows a little boy walking out of the kitchen carrying a huge plate of cookies and the caption reads, “Grandma doesn’t know the meaning of the word “No”.

Boy if that isn’t the truth. Is there anything harder then saying no to the grandkids???? Except when they are being little stinkers which mine never are of course???? : ) : )

This quote is for those of you who know you need to get up this morning and get busy but can’t figure out why you haven’t yet.

Procrastination was last seen trying to find motivation….. now they’re both lost. This is a good one for us with CFS and FM. : ) : )

Hope you have a week end full of laughter.

Jill

Sorry for a few missing posts this week. My house fairy (aka mom) came to visit on Tuesday and she helped me clean and organize the boy’s bedroom. It was bad enough that I was just wishing it would burn down! She also did all the laundry and cleaned up the kitchen.

I have to say that I have decided through careful observation (of myself that some people just can’t handle organizing. I would go into that room and my body would just melt down!

The room was so bad because I was sick around Christmas. We got tired of looking at all the stuff in the living room and I told them to just put it in their room. Of course I hadn’t had the energy to go through their old stuff and get rid of what I needed to make room for the new so they just dumped it on the floor.

Then it just went from bad to scary after that!

My mental capacity to handle organizing is something that is just not there. Fortunately mom came over and helped me get it cleaned up. I just sat there in my numb state and nodded at “keep or throw”. Trust me that is not much of an exaggeration, mom would be more than happy to tell you I’m sure!

It looks great now and the boys were so relived to have their room back again! A messy room just stresses them out too! They are going to try picking it up every night and keep it clean like that…for a week. LOL

I am slowly working on my piles around the house. It seems as if I get one pile picked up and then another 3 crop up. It’s not horrid by any means but you know how it is, you lay something down and before you realize it it’s been there for a week or a month! I’ve had some gnomes in a box waiting to go to the garage for over a month now. Of course I couldn’t find the shelves in the garage either until Mike waved his magic wand and got it cleaned up for us 2 weeks ago.

Yes, there is a reason why you never see my name on the organizing articles. I am beginning to think that in that area I’m a hopeless case and will just have to manage the piles the rest of my life. No flylady didn’t work either. I just wanted to throw the computer out the window if I got yet another email!

On a good side note I did take a trunk load to the Goodwill and have another to go tomorrow. I’m not sure where all this stuff comes from, it seems like all I ever do is get rid of stuff but it must be coming from somewhere.

To not be too hard on myself, I do realize that about 80% of my problem is that I’m sick. It’s so hard to get anything done when you don’t have any energy to do it, much less get motivated to do it.

So until the day I’m cured I will just keep tackling one or two piles a day.

Tawra

It was pretty scary (Tawra and the room). It was like something out of the Wizard of Oz with the Wicked Witch of the west (Tawra) and the good fairy (me)  trying to work together on a project. I didn’t know if I should thump her on the head with one of the boys baseball bats or gently pat her head and consider her condition. I did neither. I just ignored her and kept cleaning.

I have finally learned that if you want to drive Tawra insane or push her button I just need to just mention the word organize to push her over the edge. It’s my secret weapon to use when she is driving me crazy. : )

Actually I have had to deal with worse. Her house isn’t that bad but I knew it was a lost cause because she just wasn’t up to and hates doing it, so I just planted her on a chair in the middle of the floor with her cup of tea and went to work.

For those of you who “like” to organize as much as Tawra  here are a couple of things that might help you. One is there is nothing wrong with admitting you have a “problem” in that area and breaking down and asking someone who doesn’t to help you.

We all are gifted in different areas. I have nothing but a brown thumb. I can hardly grow wild prairie grass in my yard let alone anything else. Tawra has to come to my rescue. She has the darkest green thumb you have ever seen. She’s great when it comes to growing things.

My son is a computer wiz where me, well there are times when I am not sure if I can remember from one day to the next how to turn my computer. We all need help in different areas. Do the best you can.

If you can afford it there is nothing wrong too in hiring someone to help you, a mom’s helper, cleaning lady etc.

Sorry I got carried away. As you can see one of my gifts is the gift of gab. Plus I better get busy. It looks like I really need to get that organizing book done fast. : )

Jill

I didn’t get a chance to put our Christmas picture on so I thought I would share it today in an update.

We finished shipping the last of the New Years Sale on Saturday and I’ve been on the couch since! Actually mom, Mike and the kids did all the heavy lifting and I just sat at the computer and printed labels but that still wore me out.

I have to say of all the CFS symptoms that drive me crazy the most is the brain fog. Even though I was just sitting I got worn out just from having to concentrate so hard to make sure everything was entered correctly. If there were one thing I could cure on the CFS it would be the lack of brain power!

The pregnancy is going ok. I have been exhausted to the point of not doing much but sitting on the couch. I am going to the doc on the 22nd for the ultrasound.  I haven’t seen the doctor yet. I decided to change because with my other one I would always have to wait 1-2 hours for each visit.  I have been in once and seen the PA in November so it will be interesting to meet the new doc.

I’m 17 weeks and my blood pressure is slowing rising so in 3 or so weeks I will probably in the high blood pressure group again and on bedrest soon after that. I’m also getting contractions when I do too much so I am going to be slowing way down. (Can get you get any slower than laying on the couch all day? :-)  The baby has been moving around and I am basically out of my normal clothes now. I haven’t gained too much weight yet, yeah

I have had the worst time finding some new pants that fit right.  I tried all the major stores and almost broke down and spent $40 on a pair of pants.  After about 3 seconds I came to my senses and thought I would just have to wear sweats for the rest of the pregnancy for that price!

I went to the thrift store on Saturday and then found 4 pairs for $10 total and they all fit!!! Yeah!!  I did find a nice maternity shirt and skirt for my cousins wedding in Feb. so I won’t have to worry about that!

Oh I forgot to mention, on our sale we sold over 3500 books! We have cleared a huge spot in the garage for when the next shipmen comes. We also were able to pay off all the books so we won’t have any business debt which is what we were hoping for.  This has been our best sale ever so THANK YOU to all who ordered and we hope you enjoy your books!!

Tawra

Well, I have been in the “taking care of life’s little irritation’s” mood lately.

Having CFS and FM it’s the little things that really irritate me.  One of the big one’s was every time I did laundry I would have to match up around 50 different sets of socks!  I had purchased socks at the thrift store or garage sales to save money but this is one thing I HATED doing.

Well, the other day I took $40 and bought us all new socks. I got Mike and I 12 pairs of Gold Toe from Kohl’s on sale and with coupons. Then I got the kids all new socks from the big W.  They kept hating this pair of socks or that so I had them pick out what they wanted.

Let me say THIS HAD CHANGED MY LIFE!!  I had no idea how much this was bothering me. Now laundry takes half the time sort and fold. I wish I would have done this years ago.

The other thing I did was get a house key for each set of car keys. I am forever taking the “green car” and not  being able to get in the house.

The other thing I did was get a bright pink post it note and wrote “library due” on it.  Now all I have to do is move this to the next date when I get new stuff from the library. I was forever loosing the receipt or forgetting to write on the calendar when it was due.

I have to say, I feel so much better now.

Tawra

I’ve had a few people ask how I’m feeling.

I am doing ok. I don’t have the great surge of energy I had at first anymore. I am starting to go downhill and suspect we will be in survival mode soon. Usually we don’t hit this until 4-5 months but maybe I’m just getting “old”. hehehe

I am trying to get as much done as I can between now and then. We have the garage 1/2 organized and working on the rest. (mom I will be bringing a load over to your house soon. Unfortunately getting as much done as I can isn’t much. I’m doing all I can right now to just keep up with the dishes and laundry.

Last week we had BJ’s birthday sleepover with his friends on Friday. We had Parade call on Wednesday and want to do a photo shoot on Friday! At least I didn’t have to clean the house twice. It was very tiring. We spent 4 hours taking pictures and we were all worn out but we made it through and it will be wonderful publicity.

I am having morning sickness, at night, now but not throwing up, just nauseated. Otherwise that’s about it. Nothing too exciting happening.

Tawra

I had several people ask how old I was.

I’m 36 and Mike will be 39 in Dec. Yes, I know, he will be almost 60 before it leaves home!

I also realized that my oldest will be able to drive this one to kindergarten.

I also realized that my oldest will probably be moved out before this one even hits middle school! (my baby is leaving me already! ) LOL

Ok, yes, I feel old but not really that old. If I was in my 40’s I probably wouldn’t have starting trying again. I guess I just started nesting being “settled” for the first time in 14 years of marriage. We have spent most of those years either moving or waiting to move.

I have to say that I am feeling great! It is so freaky!! My CFS feels almost healed but my FM is worse. I am having hard time sleeping because I’m in pain. I am going to start exercising again and see if that will help.

Exercise does help my FM but it always makes my CFS worse. So….I’m assuming if my CFS is feeling better than my FM will be helped by the exercise. Did that make sense?

Yes, I am going through everything! I’m organizing and cleaning and decorating and doing all kinds of stuff!

I think I am going to insist on another hormone test and just see what the number difference is. There has to be something to that!

Tawra

I had this question below and thought I would share my response in a post by itself since I know a lot of people are wondering this.

I love the information you publish on your website. Great stuff.

I am sorry but I just don’t understand, but in fairness to you, I have to ask THE question. And this question comes from someone who is a medical professional.

Why on earth would someone who has chronic fatigue, fibromyalgia, and discusses her constant fatigue, allow herself to become pregnant? And this from someone who is “disabled”?

I am at a loss. I treat many patients who have your medical issues and know how debilitating all of this for them. Why add more burden to your family members when you are barely able to cope on a daily basis? Not being mean-spirited, I just do not understand.

Dear Reader,
I can totally understand why people would wonder this. Here’s the thing, I am going to be sick whether I have kids or not. I became ill when I was 16 and have accepted the fact that I will be sick the rest of my life unless they find a cure or Jesus comes.

I have always wanted a big family. I wanted 6 kids in fact. After 2 we thought for sure we would have 4 and after 3 we thought we’d die! LOL Yes, we took a few years to recover.

The thing is, the amount of joy we get from our kids WAY out weighs any hardship.
My kids are not perfect by any means but now that they are getting older we are reallying seeing the rewards of our “hard work”.

Yes, I am sick but we have a system down now that has made our lives much easier so we decided to go for it. We have talked about whether or not we should do this for 4 years. I wanted more kids but was not sure if it would be too much for us to have more.

Mike and I both prayed that if this was something we shouldn’t do that God would take the desire away for a larger family. After 4 years of praying it never went away. We decided to start trying and figured if it wasn’t something we should do then God would let us know. Well, after trying the first time we got pregnant. With the other 3 three it took between 3 months- almost a year of trying.

You also have to realize that we give up some things so we can have a large family. We don’t have a church right now but when we did we didn’t do a lot of activities at church. We don’t do a lot of other things like football for the kids etc. Do they miss it? No. If they really want to do something like that we will do it but we limit it to one activity at a time.

So the long and short of it is, we just feel like this is something we should do. The first 3 are older and help out a great deal so I really don’t think it’s going to be huge burden on us after the first year or two.

Of course please realize I have a wonderful mom and husband who do everything when I’m on bedrest the last 3 months. I think for Nan the rewards are worth it but you would have to ask her. LOL (so mom, are they worth it?)

One upside is that I feel WONDERFUL for the first 4-6 months. Two days ago whatever it is that makes me feel so good kicked in and I feel like taking on the world! I wish I could figure out what it is and take it all the time.

Anyway, that’s why.
Tawra

Grandkids are like chocolate; you never can get too much. Of course they are worth it! But I understand our reader’s question and where she is coming from too. The reality is that it will be hard but my kids have been ill since their teens and they had a choice to just get by or to try and live as much of a “normal” life as they could.

Everyone has things in their lives at some time or another that are struggles and things that need to be overcome, ours just happens to be a chronic illness. I think that is why God has given us families in the first place to help and support each other all through our lives.

Our situation this time hopefully will be easier then ever before. The first 2 Michael was gone all during the week and we were in a strange town and knew no one. It was pretty much me taking care of Tawra and then it was Tawra and the baby and then Tawra and 2 babies with Michael taking over on the week ends.

We were many miles from the store and doctors which was hard where now it just is a few minutes. Michael works at home most of the time now and the 2 older kids are a really big help too. Even little things like the fact we have central air and don’t have to bring in wood and build a fire makes a world of difference.

I won’t say we won’t be very tired but we have found that this to shall pass and they do eventually get potty trained and learn to feed themselves and it gets easier. My daughter keeps coming up with more projects for us but this so far has been the biggest one of all. :)

Jill (a very happy “Nan”) (that’s what my grandkids call me; short for nana)

PS I too like Debby, would like to thank the reader who asked the question for not being mean about it or judgmental. It is much more enjoyable to answer questions when someone is just curious or doesn’t understand then one who wants to hit us over the head with a hammer. :)

I thought this might just help someone. It’s interesting because I realize that I like to garden and do projects because it gets my mind off the pain. If I’m doing that then I’m not thinking about the pain.
I tried doing this below but all it did was frustrate me. It might help someone else though. Tawra

Hello,
I have had fibro and chronic fatigue for over
20 years now. I discovered a way to help me
manage them both quite by accident. Several years
ago I was in such a bad way that I was pretty
much bedridden for two winters in a row. My
husband worked nearby and had a 45 minute
lunchbreak. He would come home and fix me lunch
and check in on me while our 4 kids were at
school.

After our oldest son graduated from high school
and got an apartment we used to go over and
visit. On one of those visits he wanted to me to
play this video game on his computer called mah
jong. I hated video games but he wouldn’t back
down so I played it just to get him to leave me
alone. Much to my surprise I discovered that for
15 to 20 minutes after playing it that the brain
fog lifted and I could think clearly. (Before
this when one of my kids asked me a question no
matter how simple my answer was always I don’t
know.) We ended up going over there so often
that my son got me a game system with the mah
jong game on it.

After I got the game I used it to bribe
myself. I would play it for about 15 minutes and
then force myself to do something around the
house for 15 minutes. At first it was
excruciating. I got to the point to where I was
able to have my husband drop me off at the
library at noon and then pick me up after he got
out of work. I would do genealogy research while
there. From there I was able to work up to
working a 50 hour week at a desk job.

I learned to not focus my mind on the pain and
often I don’t realize how much I am hurting until
someone touches me.

I haven’t worked a regular job now for over 7
years now due to some other health concerns.
They have since resolved and I am trying to get
on with the business of living again. I have one
job where I clean 2 hours a week for a disabled
lady and I also do volunteer work at a charity
thrift store. I learn I have to pace myself and
try my best to avoid stress.

One of the most stressful things I deal with is
clutter. I am using my mah jong game to help me
deal with this. 15 minutes on a task and 15
minutes playing a game.
I hope my experience with this game helps
someone else.
Thanks,
Dorene

From: Brenda
What is a lymph drainage massage? And where in
Wichita, KS are area do you get one? Cost? What are
the benefits?

I have had the question several times. I have also had people asking how I am doing since being on the nutritional supplements.

First, lymph drainage massage is a very light touch massage that is supposed to move fluid out of your lymph system. If there are nodes that are clogged it’s supposed to help clear the toxins out of them.

The first time or two you do it if you have a clogged node it can make you really sick which is what I think it did to me. (I went to a different person the first time) I was in bed from Thursday-Monday it made me so sick I could hardly move.

The next time I did it, I felt sick to my stomach but not horrible. I personally think the massage helps me more than anything and I am going to try and go once a week for a month or two and then every two weeks or so.

I went to Massage Junkie on Rock Rd. here in Wichita and she was WONDERFUL! She is the best massage therapist I have ever been to. Tell her I sent you if you decide to go because I will get a free massage if 5 people that I referred go get one.

I can’t remember but I think it was $50 for an hour. Her is her website.

As for the the supplements. I am on
Fish Oil
Magnesium
Pre-natal vitamins
Vitamin E

They have helped me some but not enough for me to set the world on fire. I am still taking them but now I am also taking Pristiq (anti-depressant) and Lunesta (sleep aid). Both of these are prescription and my Medicare will cover them. I’m thankful for that because together they are over $300 a month.

I have been on the anti-depressant since July and I think that it may not be working now again. It seems like I do this with every one. It works for 2-3 months and then I start going down hill again. If it continues to not work I really don’t have anything else left to try so I’m not sure what I will do.

Unfortunately with CFS and FM they are hard illnesses to treat. You just have to keep trying as you go. We’ve been sick for 20 years now and have yet to find a “cure”. We can find some relief with some things but not a cure yet.

Tawra