More treatments plus an achievement!

Well here I am after another rather long day of infusions. I say plural because I've ended up with an iron infusion as well as the Infliximab/Remicade I was scheduled to have. Didn't even realise I was so low in iron, so there you go - glad they spotted it today, and it certainly could explain why I've been feeling so extra tired and dizzy/faint recently. Boy am I feeling exhausted right now though - I know that's partly because of the anti-histamines they gave me to limit my chances of a reaction. Going to rest in a bit.

I am feeling rather chuffed with myself right now though, as this weekend I have managed probably my most challenging hike/walk yet - a vertical walk up a snowy mountain off-piste (where I live), with 55 degree steepness and reaching around 7,500 ft. Ok I know it's not the highest mountain in the world, but for me I'm still pleased at what I've achieved - and especially now I've just found out how anaemic I was, on top of the usual symptoms I get of the dreaded D, pain, nausea, dizziness etc. A friend who was doing the walk with me said how amazed she was at my energy, especially as she thought I hardly ate anything at all (pretty right, especially when about to tackle a hike like that, as I don't want to bring on the D!) and yet I was out in front most of the way (there were just 3 of us walking though). I told her to be honest it's my stubborness and determination that gets me through most of the time, and I always try to remain positive. However, I still had to say my prayers a few times on the most steep bits and try not to look down!! Really hope I'm not sounding like I've grown an enormous head now! I've never wanted to be a big-head and don't like it in others, so big apologies if I'm blowing my own trumpet too much. I guess what I really wanted to convey is I'm feeling on top of the world and don't want this feeling to end.

It was so gloriously hot at the top that we ended up taking our clothes off and parading around in just our knickers/pants! It's mad when you think we had been hiking in snow, but then to be fair the whole way it was rather hot, and people under-estimate how strong the sun is even when there is snow. Maybe it reflects off it. It's certainly mega bright when it's like that and sunglasses are a must! I got a sunburnt head even though I wore a sunhat nearly all the way! After we had a little break at the top, we then sledged all the way down, on the pistes this time (I live on a ski resort although it's now closed for the season). People were yelling to us how mad we were, but my it was so much fun and definitely worth every strange look we got!

Anyway, will hopefully be posting a few pics of the hike soon, once I've uploaded the photos. Take care and love, R xxxx

Lovely snow and a smidgen of a rainbow!

Well thought I should cheer up by posting some more lovely pics of the snow where I live. I cannot really describe how good it feels to have a healthy walk amongst fresh snow, and breathe in the gorgeous pure air. It's delightful, and makes me so glad I'm alive.

More ill-health!

Hi all, well I'm not doing too well with this blog am I?! I hoped it would be something I would stick to, but health problems etc seem to have taken over.

Right now, I'm feeling frustrated as I'm supposed to be visiting england this weekend, for a few weeks, and am so excited at the thought of being briefly reunited with Mr C, who is returning to a war-torn country again with his job. However I am feeling really unwell again, with horrible vertigo/dizziness and feeling faint and nauseous, rather like sea-sickness. The room is constantly spinning. It started yesterday evening, after a trip to the pharmacy, and I felt as if I was going to faint right there in the middle of the shop! On top of that I keep feeling hot and cold. The problem is, I'm sure this how my last rather nasty bout of flu started, and so I REALLY could do with feeling better ASAP, so that I can enjoy my trip to england, rather than feeling awful all through it. If you believe in praying, I would be ever so grateful if you could pray for me. Thank you.

Talking of health problems, my GP is referring me to a neurologist, because I have been suffering with numbness/loss of feeling and strange sensations in my arms and hands and toes, along with one-sided facial numbness and difficulty in swallowing. I thought that perhaps it was either down to a deficiency of some sort (eg, B12, magnesium, potassium or calcium) or a possible side-effect of the Infliximab/Remicade, a drug given intravenously for my Crohn's every 6-8 weeks. I am trying hard not to worry too much about the possible cause of my symptoms, as it could be something really small. However, my mother thinks it's a real possibility that it's either temporary or permanent damage to the myelin sheath, caused by my infusions, and she thinks that I should probably stop having the infusions. However, there is only one more drug I haven't yet tried in injection form, and this too apparently can cause the same effects, so I'm not happy to come off one drug and swap it for another one that could cause me exactly the same problems, as then I am rather stuck as to what I can have for my Crohn's as frankly, there is nothing else out there that I haven't tried. Seeing as overall I am feeling the most well I have ever felt in my life, I am loathe to just stop having something that is helping me to actually live for once. However, I too know that my infusions CAN cause the dreaded MS (multiple sclerosis) and so I know that I need to check things out. Oh well, fingers crossed hey! I could be just a hypochondriac! I saw a wonderful card online the other day, in the "get-well" section as I was searching for cards for my friend, and it had a picture of a man sitting in a classroom, with a sign above him entitled "Hypochondriacs Anonymous" and the man was on the phone to his wife saying that he would be home soon, as "They all phoned in sick again"! It's hard to explain it in words, but it did make me chuckle. Would so love to give that card to someone, but you would have to be sure that they didn't take offense! Anyway, love to all, R xx

A poem about My Crohn's

I suffered for many many years
Before the doctors told my young ears
That I had Crohn's, and it was here to stay
And that it would make me suffer and never go away

I was only young back then
Only about age nine or ten,
A child who knew nothing of what was to come
Of many years of misery and a very sore tum!

So I had this tube up my nose and into my tum
Which fed me night and day – oh yum!
I even had a shiny new pump once to carry
I think my friends thought it was him I was going to marry!

So I was fed like that for a total of 8 years
I wasn't exactly the envy of my peers!
I also had all manner of pills
I'm glad I didn't pay those medical bills!

I also had to go under the knife
An op which gave me a lot of strife
But when I pulled through I was told I was a fighter
Even though I was rather a lot lighter!

I will never forget the day I saw what they took out of me
A day the nurse wheeled me into the lab so I could see
It wasn't really a very pretty sight
Seeing all my swollen intestines there in the light!

So years went by and I wasn't getting any weller
Although I still managed to hook up with a feller!
And then he went away and I had to have another operation
And with feller being away it was pretty frustrating!

Nothing could have prepared me for the hell that came,
And after my ops I was never the same
For they had to cut me open a total times of three
And there were days when I couldn't believe it was even me!

I am forever grateful to the staff who saved me from dying
To you I swear I am honestly not lying
For I nearly died several times over
With all manner of problems plus of course pneumonia

So I ended up with a little friend called a stoma
And although I was sad he did make me stronger
And without him I might not even be here to tell this tale
So I am grateful for he helped me get well

And since then I have said goodbye to my stoma
So alas I'm now all aloner!
But I think he might be back one time
And I should hope that will be just fine

But since then I've had yet another op
This roller coaster ride sure doesn't stop!
This time yet more complications
What is it with these operations!

And now I'm still plodding along
Remembering all that has past and gone
I remain hopeful for the future and that there might be
A wonder cure for all Cronies like me!

But in the meantime I want to thank you all
For being there whenever I feel alone and small
I know you all go through similar and the same
And therefore totally understand my pain

To all CZ'ers - may we all be
There for each other as long as we need
A shoulder to cry on, a person to care
A person we can share with and help us all bear

Lots of love and healing hugs, Ruth xxxx

NB: This poem was posted on the Crohnszone site - a fantastic support site for people with Crohn's and Colitis.