Well or Well? I dunno tbh

Options
DebbieT
DebbieT Member Posts: 1,033
edited 15. Jun 2014, 15:45 in Living with Arthritis archive
Hi all,

I thought it was high time I posted an update.

I had my annual brain mri in May to check the brain cyst in my Pineal Gland hadn't grown. I received a letter saying it hadn't, yippee, but that I had severe inflammation in all of my sinuses. A week later I received a 2nd letter to inform me well actually it had grown, not by much, but I've now got to be much more vigilant for symptoms such as headaches, nausea, vomiting & weakness in my limbs, especially on one side. Well I get all of that already, except the vomiting, so my GP rang to clafify exactly wot the Neurologist meant... It's if it's all a rapid onset of symptoms as it means the cyst has basically cut off the gateway that the spinal fluid travels thru & is causing my brain to swell ... Sorted!! :roll:

I saw my Dermatologist the other morning. I was weighed, Booooo, I'm the lightest I've been in 2 years, so I'm quite pleased but if you knew how little I eat you'd all wonder why I don't weigh 8st!! :(
Anyway, she's quite disappointed that my stubborn psoriasis is still breaking thru even on this biologic 'Ustekinumab'. It's also not helping my PsA at all so she will be considering changing me to a different one later in the year if the 3rd injection doesn't improve things. I'm having a blood test for Photosensitivity done as it seems I can no longer tolerate sunlight even with the uva + uvb 50 sunsense ultra total block I'm prescribed on. It may not be permanent tho :) Fingers crossed xx

I went with Hubby to see a dietitian as he has been diagnosed with diabetes, about 3 months ago.
He has medication & genetically raised triglycerides too so he's been told point blank he's going to die young without drastic measures being taken!! :cry:
She was over the moon with him :D I was so proud!!
She thinks, if he can keep going as he is, with the weight loss & way he's eating, that he may be able to control oit with diet alone!! That would be absolutely amazing if he could!! :) She also said that buying the vibrating plate machine thingy he got was a stroke of genius coz he can't exercise & it is true wot it claims about the 10 mins being roughly equal to an hour work out for ure Muscles!! So **** my migraines I'm defo gona start using it :lol:
All joking aside its terrifying. He's come off of pregabalin, to try to assist weight loss as did I, but this has left him with no pain medication at all for his nerve end damage, it's heartbreaking :cry:
He's having an mri on his spine to see if he'd be a good candidate for a nerve block, if not it's back to Neurologists (scary as they crippled him) to be put on an old 'date rape drug' that will apparently help him greatly!! It sounds so drastic but then I suppose his situation is too :?

I've been absolutely dreading today... My first Fathers Day with no Dad :cry:
I really can't cope even thinking about it so I'm trying to keep my mind occupied with reading etc

On a much brighter note ... Mums house sale is back on & she bought a 2 bedroom bungalow on Tuesday, at last, bless her AND all of our children are well & happy, on the whole, ya can't ask for more than that :D

I hope ure all as well as possible.

(((Hugs)))
Xxx xxX
Healing Hugs
Debbie.x

Comments

  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
    Options
    Oh Debbie
    I cant even imagine all this going on, when I was having my MRI there was a lady having one next and that was for her.Pineal gland I had never heard of it, like you they were keeping an eye on her, I do hope it starts to shrink very soon then hopefully a lot of your symptoms will disappear..must be such a worry..your hubby has done so well and its is not easy, I am on pregablin and would hate to have to give it up.. :o sorry you are feeling down for Fathers day..its a long time since I lost mine but I try and do something I enjoy in his memory...(((()))) xx
    Love
    Barbara
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
    Options
    Thank you Barbara. Reading is all I can manage today, his ashes were scattered so there is no marker, which is fine by me. We'll be planting a tree in our garden with flowers around the base in the coming weeks, that'll be just right!!

    I try not to dwell on the cyst too much. It's a concern but not imminent as yet I don't think .... It was 1.5cm last year but I don't know how many millimeters it's grown, it could only be 1.

    I found it very hard to adjust without pregablin too but I gained around 3 1/2-4st in less than 2years, it's benefits weren't outweighing it's risks for me. Hubby is doing great, a real inspiration :)

    Thanks again for replying to my post, it's much appreciated!!

    Xxx xxX
    Healing Hugs
    Debbie.x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Options
    Oh lordy lordy, I don't know what to say. The struggles you are facing between the two of you are daunting (to say the least) but it seems you have a strong marriage, which is both a good thing and a blessing. The artifice of Fathers' and Mothers' days is something we all address in time (as will your children) but I choose to think about the better times I had with my Ma and Pa. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
    Options
    I'm so glad the brain cyst doesn't seem to be any (much?) worse and, as for your husband, what a star! He rightly deserves his success. I hope the nerve block is a possibility.

    Fathers' Day is only a date on the calendar. I'm sure you remember him every day, with much love, and that is, surely, worth more..
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
    Options
    Thank you both ....
    My little brother, he's 40 next month :wink:, got married last week end .... I think Dad being physically missing was extremely hard visually as well as emotionally. If I'm honest I think this is my day of grieving for that loss :cry: All 3 of you are right, my memories are worth much more, unfortunately all of these firsts tend to blind me to them at the time, I'll get there tho!!

    It's been a constant bombardment since 2002 DD, usually it's hubby related or stresses of family life but my health joining in 4 years ago, good & proper, wasn't ever meant to happen. I don't know if we successfully roll with the punches or we've just become numb to it all :lol:
    Thank the Lord we've got each other tho, I've been with him since I was 15 yrs old & he was 17 & 2days :D He's my best friend ..... even wen I hate him :wink:

    If the cyst worsens or bursts I don't know wot will happen, hopefully one of us may notice n I'll have the op to help me ... If not .... Throw on You'll Never Walk Alone & sing it loud :D

    Thank you again, the support is appreciated. Now back to Vampires :wink:

    Xxx xxX
    Healing Hugs
    Debbie.x