As much as I have loved this blog, and it's predecessor, in it's day, it is now time to say bye. Too much is happening and I'm spending too much time on my computer and not enough with the people who matter or the things that matter. So it's been a good run but it's bye from me and bye from him upstairs.
Bye and see you on Facebook or Pinterest. My pinterest name is pattimyself and on FB it's Patricia Lemberger Lessell.
Patti xxx
Saturday, 6 February 2016
Sunday, 13 December 2015
NIL by Mouth
My poor Stacy is still in Watford General Hospital and it's now 3 and a half weeks! If you remember it started with a Crohn's attack and a chest infection almost 4 weeks ago.
Larry and I have been ill since last Tuesday so that was the last time we saw her until today. We have spoken to her every day.
We still aren't well but she was really fed up and I could tell, because she texted me yesterday not to phone so I got really upset and didn't sleep at all last night. I tried everything to get to sleep but it just wasn't happening. I texted Stacy but no answer. Finally I phoned around 10ish and she sounded absolutely awful.
What did I do? I thought sod it just go there and spend 5 minutes with her but don't get close. Also to take up my Kindle because her one has stopped working even though it's only a year old, if that.
So we both got dressed and Larry took me because he hates the way I take off and put on the wheelchair from the car and the new hoist is so slow it's like a turtle and I'm not very good at it to be honest, but I'm only telling you guys. Larry NEVER reads FB he thinks it's terrible and he never reads my blogs either, so I'm safe so long as YOU don't tell him.
I went in and Stacy was hooked up to two new drips and was totally out of it. She is also nil by mouth which further concerned me as it means she isn't taking any of her medication.
I asked the nurse what was going on and if the Crohns team had been to see Stacy, because Stacy told me they were coming. The nurse looked at me like 'and who do you think you are?' So I said to the nice nurse 'I'm her mother'. The nurse stepped back and apologised and said 'Sorry, I thought you were her sister.' I can take that. Don't know how Stacy would feel about it. Does that mean she looks really old or I look really young. I'll go for the second option, but really don't think I do.
The nurse told me that the surgeon and his team were coming tomorrow to discuss what to do as Stacy was still in a lot of pain. I really didn't take that well at all. I told her that under no circumstances could they possibly operate because she has, apart from everything else, PVOD. The Nurse had absolutely no idea what this was. Surprise Surprise! I explained the basic ins and outs of it but am still not sure she understood me. She gave me the phone number of the ward so I, Larry, could phone in the morning and let the day staff know exactly what is wrong with her and to warn the Surgeons that if they operate they will kill her.
Stacy was sleeping this whole time except for when I tried to wake her up by gently shaking her leg and she opened her eyes and I left her an Apple plug and my Kindle, which I can manage without because I have other ways of reading - like my phone which is fine to read on. But I'm not sure she will remember I was there.
When Stacy is awake she really is fed up with being in hospital and I certainly don't blame her. She isn't well and has spent most of the last 5 months in one hospital or another. It really sucks!!! And I really feel for her.
The whole thing is truly heartbreaking. I so want her to be able to go on an unforgettable holiday and I so hope she gets better soon to be able to go. The pledges have stopped because my goal was reached, but I didn't think they would and I hate being greedy but as my son said I should have checked how much everything was going to cost before I put a sum up. I just thought of a number and away we went, regardless if the amount is enough or not.
Please get better soon my Stacy because we love and miss you, and if you were well we would be seeing you all the time but we don't want you to get sicker by catching whatever we have.
All my Love Forever
Mum xxxxxx
Larry and I have been ill since last Tuesday so that was the last time we saw her until today. We have spoken to her every day.
We still aren't well but she was really fed up and I could tell, because she texted me yesterday not to phone so I got really upset and didn't sleep at all last night. I tried everything to get to sleep but it just wasn't happening. I texted Stacy but no answer. Finally I phoned around 10ish and she sounded absolutely awful.
What did I do? I thought sod it just go there and spend 5 minutes with her but don't get close. Also to take up my Kindle because her one has stopped working even though it's only a year old, if that.
So we both got dressed and Larry took me because he hates the way I take off and put on the wheelchair from the car and the new hoist is so slow it's like a turtle and I'm not very good at it to be honest, but I'm only telling you guys. Larry NEVER reads FB he thinks it's terrible and he never reads my blogs either, so I'm safe so long as YOU don't tell him.
I went in and Stacy was hooked up to two new drips and was totally out of it. She is also nil by mouth which further concerned me as it means she isn't taking any of her medication.
I asked the nurse what was going on and if the Crohns team had been to see Stacy, because Stacy told me they were coming. The nurse looked at me like 'and who do you think you are?' So I said to the nice nurse 'I'm her mother'. The nurse stepped back and apologised and said 'Sorry, I thought you were her sister.' I can take that. Don't know how Stacy would feel about it. Does that mean she looks really old or I look really young. I'll go for the second option, but really don't think I do.
The nurse told me that the surgeon and his team were coming tomorrow to discuss what to do as Stacy was still in a lot of pain. I really didn't take that well at all. I told her that under no circumstances could they possibly operate because she has, apart from everything else, PVOD. The Nurse had absolutely no idea what this was. Surprise Surprise! I explained the basic ins and outs of it but am still not sure she understood me. She gave me the phone number of the ward so I, Larry, could phone in the morning and let the day staff know exactly what is wrong with her and to warn the Surgeons that if they operate they will kill her.
Stacy was sleeping this whole time except for when I tried to wake her up by gently shaking her leg and she opened her eyes and I left her an Apple plug and my Kindle, which I can manage without because I have other ways of reading - like my phone which is fine to read on. But I'm not sure she will remember I was there.
When Stacy is awake she really is fed up with being in hospital and I certainly don't blame her. She isn't well and has spent most of the last 5 months in one hospital or another. It really sucks!!! And I really feel for her.
The whole thing is truly heartbreaking. I so want her to be able to go on an unforgettable holiday and I so hope she gets better soon to be able to go. The pledges have stopped because my goal was reached, but I didn't think they would and I hate being greedy but as my son said I should have checked how much everything was going to cost before I put a sum up. I just thought of a number and away we went, regardless if the amount is enough or not.
Please get better soon my Stacy because we love and miss you, and if you were well we would be seeing you all the time but we don't want you to get sicker by catching whatever we have.
All my Love Forever
Mum xxxxxx
Friday, 4 December 2015
Please Help If You Can
 |
| This photo was taken 2 years ago when Stacy was better than she currently is. |
Please help if you possibly can. Our younger Daughter, Stacy, has been ill for most of her life with Crohn's Disease which is debilitating to say the least.
However about 12 weeks ago Stacy was diagnosed with PVOD which stands for Pulminary Veno-Occlusive Disease. This disease is so rare it is rare even in the realm of rare diseases, and always terminal with a median time of 2 years from diagnosis. However Watford General Hospital knew she had Pulminary Hypertension last June, so we have no idea how long she has had this for. This disease is so rare that only 1 in 10,000,000 - yes you've read this right it's one in ten million people have this.
This has been really awful for all of us, but especially for Stacy, and all she wants is one last holiday with her family, but we don't have the resources to give this to her as we are both just Pensioners on the State Pension.
One night when I couldn't sleep I suddenly thought of Crowd Funding by Just Giving so I have made a page for her where you can donate anything from £10.00. Every single donation will be so gratefully received. Here is the link to our page.
Thank you so much for even reading this and we are really grateful for everything donated.
Patti xxx
American by birth and MOUTH
but British in every other way
Thursday, 29 October 2015
The Explanation
I know it's been ages, but so much has happened in our lives it just isn't true.
Our younger daughter Stacy, middle child - well woman really, had been ill for quite some time with Crohns, amongst other things, and every time she was admitted to our local hospital instead of waiting to see if she was actually having a Crohns attack they just put her on intravenous steroids.
I don't know if you are aware, but, as usual, there is a price to pay for everything you put in your mouth - be it food or medicine. Well the upside of steroids is they cure whatever ails you quite fast but the downside of them is they can cause all kinds of nasty things. So along with the Crohns she now has had, for quite some time, Osteoporosis, Avascular Necrosis of both hips (this means they are dead), had her left hip replaced twice and it still isn't any good, the surgeon who replaced it both times left her without a left hip for 9 months. She also has Fibromyalgia and rotting teeth, which all have to be removed, and Watford General Hospital, or somebody there, told her she had a heart murmur.
Call me stupid but I thought you were born with a heart murmur and it wasn't something that just happened later in life. She does not have a heart murmur. It turned out she had something way worse.
The last time she was discharged from WFGH, in June, they said that they would refer her to Hammersmith Hospital. Well nothing happened. And she kept on getting really swollen up. She looked like she was on steroids big time, but wasn't. Her whole body was so swollen it was untrue, so much so that she was unable to even open her eyes because they were swollen shut. Finally she called our local doctor and he took one look at her and made an appointment for her to be seen at Hammersmith Hospital on Monday 17th August.
An Ambulance took her to Watford General Hospital on 31st July, and Larry and I went before her to complain and wait for her to arrive. Stupid us, we didn't complain but just waited there for two hours for the ambulance to bring her. We had our two eldest grandchildren with us and Stacy eventually arrived at around 5pm. At 6 we left Stacy there and took the children for something to eat. The children and I got back to the hospital around 7. At 1a.m. a doctor came and said that there was nothing they could do for her because it was the weekend and there were no doctors on and if they admitted her she would not make her appointment on Monday at Hammersmith. I was so angry and I told the doctor that if anything happened to Stacy over the weekend I was holding her 100% responsible. Didn't seem to even phase her.
Stacy was admitted to Hammersmith Hospital on August 17. We were told later that week that what she had was rare even in the realm of rare diseases and it affected around one in 10,000,000 people and that it was incurable. Well I've lived with Multiple Sclerosis for many many years and that's incurable so I thought so she'll manage. What we didn't know until the following week that what, in fact, she has is a very rare form of Pulmonary Hypertension called PVOD which, well you can read it for yourself because I sure don't want to go into the ins and outs of it and cry I shall be doing again.
Stacy was in Hammersmith Hospital for 8 weeks and we went every day and sometimes twice a day there and back so she could go out and have her hair done, out for lunch a couple of times back to Watford, and have her nails done as the polish had to come off for a procedure. It was about a 35mile a day journey if we went there and back once a day.
But I have to say that as bad as Watford General have been over the years that's how good Hammersmith were. And when we explained that her Gastro doctor at Watford had put her down as a Hypochondriac, and we believed him I'm ashamed to say, the new doctor who is amazing said she was anything but and was in fact a very sick young lady - well she looks young.
This is why I've been missing for so long and why my sewing machine is still in it's box and all the rest of my stitching hasn't been touched. No matter how much I want to do something I just can't.
See you soon
Patti xxx
American by birth and MOUTH
but British in every other way
Our younger daughter Stacy, middle child - well woman really, had been ill for quite some time with Crohns, amongst other things, and every time she was admitted to our local hospital instead of waiting to see if she was actually having a Crohns attack they just put her on intravenous steroids.
I don't know if you are aware, but, as usual, there is a price to pay for everything you put in your mouth - be it food or medicine. Well the upside of steroids is they cure whatever ails you quite fast but the downside of them is they can cause all kinds of nasty things. So along with the Crohns she now has had, for quite some time, Osteoporosis, Avascular Necrosis of both hips (this means they are dead), had her left hip replaced twice and it still isn't any good, the surgeon who replaced it both times left her without a left hip for 9 months. She also has Fibromyalgia and rotting teeth, which all have to be removed, and Watford General Hospital, or somebody there, told her she had a heart murmur.
Call me stupid but I thought you were born with a heart murmur and it wasn't something that just happened later in life. She does not have a heart murmur. It turned out she had something way worse.
The last time she was discharged from WFGH, in June, they said that they would refer her to Hammersmith Hospital. Well nothing happened. And she kept on getting really swollen up. She looked like she was on steroids big time, but wasn't. Her whole body was so swollen it was untrue, so much so that she was unable to even open her eyes because they were swollen shut. Finally she called our local doctor and he took one look at her and made an appointment for her to be seen at Hammersmith Hospital on Monday 17th August.
Stacy was admitted to Hammersmith Hospital on August 17. We were told later that week that what she had was rare even in the realm of rare diseases and it affected around one in 10,000,000 people and that it was incurable. Well I've lived with Multiple Sclerosis for many many years and that's incurable so I thought so she'll manage. What we didn't know until the following week that what, in fact, she has is a very rare form of Pulmonary Hypertension called PVOD which, well you can read it for yourself because I sure don't want to go into the ins and outs of it and cry I shall be doing again.
Stacy was in Hammersmith Hospital for 8 weeks and we went every day and sometimes twice a day there and back so she could go out and have her hair done, out for lunch a couple of times back to Watford, and have her nails done as the polish had to come off for a procedure. It was about a 35mile a day journey if we went there and back once a day.
But I have to say that as bad as Watford General have been over the years that's how good Hammersmith were. And when we explained that her Gastro doctor at Watford had put her down as a Hypochondriac, and we believed him I'm ashamed to say, the new doctor who is amazing said she was anything but and was in fact a very sick young lady - well she looks young.
This is why I've been missing for so long and why my sewing machine is still in it's box and all the rest of my stitching hasn't been touched. No matter how much I want to do something I just can't.
See you soon
Patti xxx
American by birth and MOUTH
but British in every other way
Sunday, 30 August 2015
Thursday, 9 July 2015
This is Amazing
Hi Anyone out there
If there is anyone out there. Anyway I came across this video about the sewing method of cross stitch, which I really like, and thought I would share it. I'm not entirely sure how to do this but I shall try. Sorry I couldn't figure out to to do this. But I will put a link here so that you can see how Louise May Glennon does it.
Louise Mae Glennon Stitching and using a Hoop
Hope you like this as much as I do because I really prefer to stitch whilst sort of watching TV and using a hoop when stitching anything small.
Until next time
Hugs
Patti xxx
If there is anyone out there. Anyway I came across this video about the sewing method of cross stitch, which I really like, and thought I would share it. I'm not entirely sure how to do this but I shall try. Sorry I couldn't figure out to to do this. But I will put a link here so that you can see how Louise May Glennon does it.
Louise Mae Glennon Stitching and using a Hoop
Hope you like this as much as I do because I really prefer to stitch whilst sort of watching TV and using a hoop when stitching anything small.
Until next time
Hugs
Patti xxx
Friday, 22 May 2015
I know it's been over a month - sorry
So sorry people. But on the other hand I have decided that I have lost my teeny tiny mind - that's if I have one. Why? Because I was going to kit up Mary Gail - that's her underneath here
as stitched by Nicola Parkman
The link is to Nicola's Blog
with fabric and silks (mad woman) when I already have Mary Hurst kitted up and ready to go. I really am totally nuts. And this is Mary Hurst here
Mary Hurst 1661
with linen and silks and everything. Mad as a hatter that's me. Can I blame my MS on this. No I think not. Just pure crazy I am. This I have decided all by myself without any help from my DH - in fact he didn't even know what I was going to do. Thank g-d for that!
Again by Nicola Parkman
Nicola has actually finished Part V but I haven't even started it yet. To be utterly truthful I think that Mary Hurst is scaring me but I shall do what Nicola did and have a piece of cloth that I can practice some of the stitches on. Okay not some mainly one ... the detached buttonhole which scares me to death but it does look gorgeous.
I also have started a teeny bit on The American Quaker Sampler byThe Scarlet Letter too and that is also kitted up with silk. Britta Jenkinson was stitching this about 6 years ago and it was love at first sight.
And I have had And They Sinned for years with a teeny tiny bit done and obviously this one is kitted up too with all the Sampler Threads it called for.
And They Sinned
(aka as ATS)
So all in all I am not buying another thing. Except I have already and I will show you as soon as my lazy ass get's off this couch and takes a photo of all that I have bought to replace what I sold five years ago. Well one needs stash doesn't one? (how British does that sound.)
Finally if you have Multiple Sclerosis or know of somebody that does please let them know I have a new blog on it. Why suddenly? Because I thought maybe, but maybe I could help somebody. The blog's address is My Multiple Sclerosis how original is that??? NOT I know!
Until next time.
Lots of Hugs
Patti xxx
Subscribe to:
Posts (Atom)