Things are going well.

It’s been almost a month since I had surgery to removed my ovaries and fallopian tubes and in that time I’ve not had any episodes of vomiting. I can eat wheat again but I do seem to be sensitive to foods containing MSG. Thanks to this website I now know the sneaky names of MSG. It’s worth reading and saving the list of names.

At my NF2 clinic appointment recently I was told that the spinal cord tumour at the base of my neck needs to be removed because it’s pushing my spinal cord to the right which is causing problems with my right hand but they don’t want to do surgery until I regain some of the weight i lost over the past 18-19 months due to all the vomiting episodes. It’s easier said than done at the moment because I’m struggling to eat without waiting to start vomiting again. Good thing is a can eat whatever I want as long as it’s got lots of calories. I will be seeing a dietician soon to help me.


Yay, page finish.

I just finished page 1 on HAED Mini, The Astronomer. 5,200 stitches complete. I’ve been really enjoying this.

Time to recover.

Well the surgery has been done. I no longer have ovaries or fallopian tubes. I have 3 small incisions and a little one in my belly button which they used to inflate my tummy so they had room to see my insides. Quite a bit of pain when getting up from the sofa or turning over in bed but that will calm down over time. So now I won’t have any more vomiting episodes once a month. I came home Wednesday and last night I slept well in our bed, apart from when I wanted to turn over. Lol. I gave up trying to change positions and slept well on my left side. The dogs were happy I was home. My hubby too was glad when the surgeon said I could go home. I will spend the next couple of weeks taking things slow. I’m glad it’s done and now we can look forward to the future.

Less than a week to go

After the gynecologist a couple of weeks ago. I was told that they are going to do a laparoscopy hysterectomy to remove my ovaries and fallopian tubes to stop my periods which is now the major cause of the IBS-C flare ups and week long vomiting episodes. I seem to have the new wheat and lactose free diet under control so I don’t have any IBS-C episodes from certain foods. Unless I eat something that triggers it and I have a day of vomiting and gut spasms. Also my thyroid is been looked into again because the last time I was in hospital they said my thyroid is fine and I don’t need the medication I was on and that could be what’s been causing all the sickness. So since then I haven’t taken the thyroid medication and so far I’ve been fine. I have NF2 clinic next month so I’ll find out if all the radiotherapy and gamma knife treatment has been successful. Also I will find out about how the rest of the tumours are doing. Fingers crossed none of them have grown.

Time for some lifestyle changes.

Saw the gynecologist again yesterday and told her of the CVS episodes that I have been still having with the zoladex implant. She said that because of that it’s not my menstrual cycle that’s causing the CVS (cyclical vomiting syndrome). After we explained a bit more about what I go through with the vomiting, she said it sounds very much like ibs because of the stomach cramps and the trouble I have going to the toile, as well as the vomiting. My GP is referring me to a gastroenterologist to investigate it all. After reading a book and looking online, the problems I have had with my bowels most of my life, made us think that IBS-C is probably the culprit to the CVS. So seeing as a few takeaways have caused CVS episodes, we are now completely cutting those out of our lives. We have a feeling MSG is also something to avoid due to the amount of Chinese takeaways that have effected me but not my husband, seeing as what we order is eaten by us both. We’ve been given tips by our chemist on some medication that can help with the IBS-C.So hopefully if I have any starting symptoms then i can take the suggested meds and hope it sorts it out before I end up vomiting for days on end. Hopefully once I know from the gastroenterologist what the frick is going on with my body, I can really control it and live in peace. Lol.

Damn this CVS.

Had yet another episode of CVS (cyclical vomiting syndrome). It started Monday and stopped yesterday. Thankfully this episode and the last one, a couple of weeks ago, have been quite mild compared the the other episodes over the past 16 months. Monday I go for my second Zoladex implant to be done so hopefully that will sort these episodes out. I was told the first implant may not have taken full effect to stop the CVS but the second on should. I had this same problem when I was on Zoladex earlier this year during my Radiotherapy treatment. I truly feel that going the Hysterectomy path is going to be the best way of dealing with this. I cannot carry on like this until nature takes its course and my menstrual cycle stops with the menopause. If this CVS doesn’t get sorted, my health is going to deteriorate. I have enough to deal with when it comes to my genetic medical condition, Neurofibromatosis Type 2. This year hasn’t been a good one so far but I am hoping it will not last.

Fancied stitching a HAED.

Last night as I drifted off to sleep I had an urge to work on one of my HAED (Heaven And Earth Designs) WIP’s. The first one that popped into my head was Train of Dreams. So here it is. I last stitched any of this was January 2017!!! 

What a rough few weeks.

I honestly don’t know how I’m still here after all that I’ve been through since the end of April and the 28th May, I have been admitted into hospital three times due to CVS (cyclical vomiting syndrome). I have ended up with two UTI’s after being discharged. I hope the next couple of weeks fly by, without any illnesses, so I can  finally see a gynecologist to find of what can be done about the CVS every time it’s the “time of the month” for me. I cannot live like this until the menopause stops my periods. That could be years. This amount of vomiting could cause me to have problems with my esophagus, teeth and weight. I’m already anemic. Even my appetite at the moment is terrible. I miss being able to snack throughout the day and still eat proper meals. At the moment I feel like I have a tight belt around my stomach making it difficult to eat a meal the size you’d give a toddler.