Sunday, August 28, 2011

Floppy Clocks

A week ago I went and had an ultrasound done on my stomach. As most of you will know I have had ongoing stomach issues that contribute largely to my illness. The scan was to check that I don’t have an aortic aneurysm or tumor etc. The trip out to go and get the scan was more terrifying to me than the possibility of them actually finding something scary. In the end a 15 minutes scan took 5 hours because in order to leave the house I needed assistance from an ambulance (they physically had to carry me back up the stairs to my apartment, four of them, one on each limb). Because I wasn’t an emergency I basically had to take the ambulance whenever they had one free … so they picked me up 2 hours before my appointment initially and then came to get me 3 hours after my scan was done. It was a very very long and exhausting day, but I am proud of myself for getting through it. My Dad came along and acted as my voice which was a huge help. Anyway … the only thing the scan showed was some cysts and vascular calcification on both kidneys. I have a phone appointment with my Dr next week to find out if there are any implications of this. From what I have read online it’s no big deal really. So the mystery of what is causing all the stomach pain continues unfortunately, but at least I don’t have something that is going to kill me!

The week following my appointment I have been pretty badly crashed although not as badly as I had expected. I hate times like this when all you can do is nothing at all … rest rest and more rest. Five days without a shower (again), no reading, very little watching TV or being on the computer.
The last 2 days I have finally bounced back so have been trying to play catch up on everything ….
I realized this morning that even on my better days it’s still all about playing catch up because if I shower today then I will need total rest for a few hours afterwards and then will only be able to do small essential things like eat and probably watch TV … so the other stuff I’d like to do today such as put my clean laundry away will have to wait till tomorrow … and then it’s the same scenario all over again … so everyday is catch up!! It’s like we have to operate on a Dali floppy clock … we should start a ME/CFS time system, one hour for us equals 24 hours for ‘normals’. Hahahaha

On a parting note I just want to say that I am excited because I have now receieved all my supplements to start on the Simplified Methylation Protocol. I will most likely post about this next time and explain what it is and how I am going. It’s good to have something to feel excited about !!


  1. still finding it mindblowing to think that took 5 hrs and SO much more out of you than it needed to (when will people understand) - and still think you are a true superstar for getting through it. XXOO

  2. Hi there, just read this with tears in my eyes, I know exactly how you feel - sadly! Would love to hear more about the Protocol and how you get on with it. Best wishes and remember - Only the strongest trees in the forest can withstand the harshest winds. XOXO

  3. Lee Lee - I am sooooo glad it was nothing too serious. I was really worried about you.

    I'm sorry you are dealing with PENE but am glad you are doing a little better today.

    I had to go to the hospital on Monday last week and had to pay for it with 2 days in the dark. So frustrating that we always have to pace in order to do anything.

    I'm really proud of you for getting through this incredibly challenging appointment. You go!

    Hope you have a better day today!

    BTW, the artwork you posted here is one of my favorite pieces. I love that one!


  4. What an ordeal! Just to get a scan done. I'm glad you made it "though" and aren't as badly crashed as you thought. It's so hard (if not imposible) to know what's going to crash us on what day...I hate living with the makes it hard to know what we should and should not being trying to do right?

    And I get the bordom too. Sometimes if I think about another day lying in this bed I want to scream...I'm glad we have our online lives though, because imagine having this illness 50 years ago?

    Hope you continue to recover quickly and that they figure out SOMETHING to help with the stomach stuff. I'm sure you've had billions of suggestions but for me, leaving wheat behind made a big difference.

  5. Bless you Lee Lee, I suffer from fibro since mid 80s and in 2005 came down with CFS, sleeping for a solid 2 years losing the use of my knees by 2008 since I was not using my knee muscles. Then sitting a chair feeling as if I was wearing a LEAD SUIT hard to even stand or go to the bathroom. Finally doing my nightly searches I could muster up I found a mention of Low Dose Naltrexone, (LDN) My Dr was not interested in giving me any "off label" treatments, so I did more resarch on how to get the 50 mg Naltrexone myself and disolve it in 50 ml of purfied water keeping it cold and taking a dose each night. Starting at .5 ml so small I know but as you know CFS / FIBRO are sensative to meds.. I kept goign up ever 2-3 weeks now that I am at 2.5 and seem to be thinking this is my dose, any higher makes more problems, but 2.5 ml is really helping I urge you to research it just LDN CFS and read how many of us are being helped by it. After only 3 weeks on LDN I love it so much I started a support group, recently have a new member in your same town who is using LDN and love it so mcuh he started his own compound pharmacy and makes tablets 4.5 mg to make it easy on the takers.. no more mixing up the 50 mg tablets for many who use is pharmacy its called Oz Pharmacy.. come see us at my group please.. we love to support and help answer any questions HUGS and blessings!! CLICK ON MY NAME and it will take you to the facebook support site. just ask to join someone will add you!!

  6. Thanks Renee, the only reason I haven't tried LDN is that I have POTS and from what I have read it will make this worse .... I will check out your group though and see what others think about it all.