Hi,
My head just seems so full that I can't get my mind around anything. I'm hoping if I tell my story to someone ho doesn't know me it could help?!
I've just turned 38 and have recently been diagnosed with diabetes and I'm just trying to get my head around everything.
I have crohne's disease which I've been diagnosed with for 20 years now After lots visits to GP and being told for years that my problems with my tummy were nerves about GCSEs then A levels I eventually ended up in hospital with an abcess that was just about to burst and had to be operated on immediately. I was in hosp for approx 3 weeks and had surgery a further 5 times for 5 more abcess's. I was seen by a surgical and medical team and after trying lots of things including steroids (which I have had on and off for years) elemental diet for 15 weeks it was decided that I had to have an ileostom-at 20 which I've had for 17 years.
Right now I have oral crohne's (which is unusual-which seems to be my theme!) as well as further down my bowel. M inflamatory markers were in the 150's and should be 60, I have an MRI booked for next week and my consultant was takng my case to a multi discipline meeting to try to work out what next I take 3 immuno suppresants including adalimumab which I self inject every 2 weeks. Crohne's is caused when your immune system turns against and attack the body-in the case of crohnes anywhere on the digestive tract from mouth to the other end.
OK, so I had crohne's and had a major op-which did leave me feeling a lot better. I was told pregnancy probably wouldn't happen (because of scar tissue and the fact that I wasn't diagnosed for 6 years) and if it did happen it would take a long time. MY dad died very suddenly at 47 from a massive heart attack and I forgot my contraception-4 weeks after the funeral I found out I was regnant-with identical twins! They were born 8 weeks early and we nearly lost the oldest (I was 3 days in labour and it got complicated-I eventually asked for a C section), but they are healthy and nearly 16.
I was told that falling pregnant so easily as a fluke and if I wanted another baby to try to have it before 25-but again was told that it was unlikely. Again after 1 month of no contracteption I was pregnant-even though my husband was only home 2 days a week!
I had my little boy 14 years this summer and lost my half brother. I noticed that winter that when I was putting the shopping in the freezer it was hurting the joints on my fingers. I mentioned this to my GP (a different practice to that which I had when I was younger) and she said because it was me she would do a blood test. Lo and behold-it came back with a really high positive rhumetoid factor. I was sent to the same hospital i go to for my crohne's to see a consultant. A year later I needed a walking stick which I still use.. About this time my marriage ended and I moved out with the kids who were 3 and 5 at the time. Although I have had a long term relationship since then I am the only adult in the house with 3 teenagers. I am lucky in that although this long term relationship ended we are still on good terms and see each other regularly and he makes sure he see's the chilldren too.My twin girls will not go to see their dad so I'm pleased that they have got a positive male role model.
I saw a different consultant who further diagnsed my with fibromyalgia and ankylosing spondilitis. I lost my job 5 years ago due to being ill.-These are all auto immune conditions too.
I now have a wheelchair that I've hand for a while but this week has been the first time I've really had no choice but to use it extensively all week-even in the house. My son has a GCSE options open evening at school next week and hes asked me not to go in the electric wheelchair.
I saw my GP a couple of years ago complaining of excessive thirst, going to the loo a lot and being really tired I asked him if I cold be diabetic-he said no and didn't do a blood test. Then, during the autumn last year I got one kidney infection after another-I had 6 in a row. A couple of different GP's checked my wee and said there was sugar in and arranged a blood test. The test came back with a reading of 10. I was told I was diabetic but it was going to be treated by diet-then given no advice, help or support on how to do this.
The same GP also made an appointment at the hospital for an investigation to be made into bladder and kidneys to make sure nothing else was going on. The ultrasound and x ray came back fine and I was asked to go into hospital to have a general anasthetic to have a camera look at my bladder. When I went in at 7 in the morning my finger was pricked and blood tested-it came up at 13. Having not had this done before and not checking my own levels I didn't know if this was normal for me but the nurse was worried. I was tested again in recovery-again 13. Then after going back to the ward and having a cup of tea and slice of toast they were checked again-it had risen to 21! a doctor was called and I was asked to stay a further 2 hours for another reading. I did and it was 19. The doctor let me go home asking me to get in touch with my GP the following week. I rang up on the Tuesday and a GP rang me back (a new system at my dr's), I explained the story and she asked me to go straight in. I was seen and she pricked my finger and I had a reading of 18. She rang and spoke to a diabetic registrar and I was asked to go straight to the hospital. After lots of waiting and a couple of blood tests I saw the registrar my GP had spoken too. She said with my reading being so high and my crohnes flaring I needed insulin. She said she would let me home and make an appointment at the diabetic center for me. She explained there was no use giving me insulin then and there as I needed to be shown everything by a specialist nurse. The appointment came through for the following Monday-the 11th. I went and everyone from the receptionist to the prof were lovely and I was started on insulin. My nurse rang my every couple of days until last Friday when she went on holiday. I was told to increase to 62 before breakfast and 44 before tea an I spoke to a different nurse on Monday who asked me to go through my readings then said to carry on and I would not e speaking to anyone until next week. I asked if I should stay on the same and what to do if my reading went back up (they have been as high as 31.4 and as low as 8! But are more often between 13-21), she said to just stay on the same and speak to my nurse who will have come back from holiday on Monday.
So, I'm not sleeping because everything is just spinning through my head. It looks like my immune system is just going through different organs and turning on them, and I was wondering if I had LADA-which would fit with everything else? I do have a high BMI but it's more to do with the fact that I am so not able to do the amount of activity I used to do-even the amount of waking I used to do at work from the office to look for people etc rather than what I eat. I've been keeping a food diary and I really don't understand how my reading are so high. I eat low to lowish carb anyhow and don't eat any cake/sweet stuff to push them up. I know my morphine medicine has corn syrup in it but I don't have that all of the time and it;s a spoonfull at a time.
My mum comes once a week to help tidy and the kids help as well-but no more than they would if I wasn't poorly. Other than that, the kids and my ex popping round which is more for the kids benefit I am alone. I keep in touch with family on facebook and have a couple of friends who are not totally bored of everything who I still see a couple of times a year but other than that I am alone. I miss having the comradery of people at the office and hearing what is going on in other people's lives. I kept working as long as I could-it helped with the pain and gave me a sense of self worth. Now I'm an overweight medical complicaton and someone my son does't want to be seen with i the wheelchair-which I have really really resisted using but now there is no other option and I feel useless-I can't even get up the stairs to the kids bedrooms-I had to have a bedroom and en suite built downstairs-luckily this was done before I lost my job.
Well, if you've read this far you deserve a medal. It has made things a little clearer-but it seems like bed time is the time I get upset about everything and need to talk to someone about it. The kids are too young and I wouldn't go there anyhow, my mum has a heart problem and my sister and the friends I do have have their own families and lives and don't need to be bothered. A couple of year ago I had what I thought was a really good friend, we had been friends for some time (she was even god mother to 2 of the kids) and she encouraged me to talk to her and email or text her when stuff was going round my head-she did the same to me but after a few weeks she told me it was too much and she didn't want to be friends or speak to me again. Now I find it best to not share which is probably part of the reason this all got so big!
Thank you
My head just seems so full that I can't get my mind around anything. I'm hoping if I tell my story to someone ho doesn't know me it could help?!
I've just turned 38 and have recently been diagnosed with diabetes and I'm just trying to get my head around everything.
I have crohne's disease which I've been diagnosed with for 20 years now After lots visits to GP and being told for years that my problems with my tummy were nerves about GCSEs then A levels I eventually ended up in hospital with an abcess that was just about to burst and had to be operated on immediately. I was in hosp for approx 3 weeks and had surgery a further 5 times for 5 more abcess's. I was seen by a surgical and medical team and after trying lots of things including steroids (which I have had on and off for years) elemental diet for 15 weeks it was decided that I had to have an ileostom-at 20 which I've had for 17 years.
Right now I have oral crohne's (which is unusual-which seems to be my theme!) as well as further down my bowel. M inflamatory markers were in the 150's and should be 60, I have an MRI booked for next week and my consultant was takng my case to a multi discipline meeting to try to work out what next I take 3 immuno suppresants including adalimumab which I self inject every 2 weeks. Crohne's is caused when your immune system turns against and attack the body-in the case of crohnes anywhere on the digestive tract from mouth to the other end.
OK, so I had crohne's and had a major op-which did leave me feeling a lot better. I was told pregnancy probably wouldn't happen (because of scar tissue and the fact that I wasn't diagnosed for 6 years) and if it did happen it would take a long time. MY dad died very suddenly at 47 from a massive heart attack and I forgot my contraception-4 weeks after the funeral I found out I was regnant-with identical twins! They were born 8 weeks early and we nearly lost the oldest (I was 3 days in labour and it got complicated-I eventually asked for a C section), but they are healthy and nearly 16.
I was told that falling pregnant so easily as a fluke and if I wanted another baby to try to have it before 25-but again was told that it was unlikely. Again after 1 month of no contracteption I was pregnant-even though my husband was only home 2 days a week!
I had my little boy 14 years this summer and lost my half brother. I noticed that winter that when I was putting the shopping in the freezer it was hurting the joints on my fingers. I mentioned this to my GP (a different practice to that which I had when I was younger) and she said because it was me she would do a blood test. Lo and behold-it came back with a really high positive rhumetoid factor. I was sent to the same hospital i go to for my crohne's to see a consultant. A year later I needed a walking stick which I still use.. About this time my marriage ended and I moved out with the kids who were 3 and 5 at the time. Although I have had a long term relationship since then I am the only adult in the house with 3 teenagers. I am lucky in that although this long term relationship ended we are still on good terms and see each other regularly and he makes sure he see's the chilldren too.My twin girls will not go to see their dad so I'm pleased that they have got a positive male role model.
I saw a different consultant who further diagnsed my with fibromyalgia and ankylosing spondilitis. I lost my job 5 years ago due to being ill.-These are all auto immune conditions too.
I now have a wheelchair that I've hand for a while but this week has been the first time I've really had no choice but to use it extensively all week-even in the house. My son has a GCSE options open evening at school next week and hes asked me not to go in the electric wheelchair.
I saw my GP a couple of years ago complaining of excessive thirst, going to the loo a lot and being really tired I asked him if I cold be diabetic-he said no and didn't do a blood test. Then, during the autumn last year I got one kidney infection after another-I had 6 in a row. A couple of different GP's checked my wee and said there was sugar in and arranged a blood test. The test came back with a reading of 10. I was told I was diabetic but it was going to be treated by diet-then given no advice, help or support on how to do this.
The same GP also made an appointment at the hospital for an investigation to be made into bladder and kidneys to make sure nothing else was going on. The ultrasound and x ray came back fine and I was asked to go into hospital to have a general anasthetic to have a camera look at my bladder. When I went in at 7 in the morning my finger was pricked and blood tested-it came up at 13. Having not had this done before and not checking my own levels I didn't know if this was normal for me but the nurse was worried. I was tested again in recovery-again 13. Then after going back to the ward and having a cup of tea and slice of toast they were checked again-it had risen to 21! a doctor was called and I was asked to stay a further 2 hours for another reading. I did and it was 19. The doctor let me go home asking me to get in touch with my GP the following week. I rang up on the Tuesday and a GP rang me back (a new system at my dr's), I explained the story and she asked me to go straight in. I was seen and she pricked my finger and I had a reading of 18. She rang and spoke to a diabetic registrar and I was asked to go straight to the hospital. After lots of waiting and a couple of blood tests I saw the registrar my GP had spoken too. She said with my reading being so high and my crohnes flaring I needed insulin. She said she would let me home and make an appointment at the diabetic center for me. She explained there was no use giving me insulin then and there as I needed to be shown everything by a specialist nurse. The appointment came through for the following Monday-the 11th. I went and everyone from the receptionist to the prof were lovely and I was started on insulin. My nurse rang my every couple of days until last Friday when she went on holiday. I was told to increase to 62 before breakfast and 44 before tea an I spoke to a different nurse on Monday who asked me to go through my readings then said to carry on and I would not e speaking to anyone until next week. I asked if I should stay on the same and what to do if my reading went back up (they have been as high as 31.4 and as low as 8! But are more often between 13-21), she said to just stay on the same and speak to my nurse who will have come back from holiday on Monday.
So, I'm not sleeping because everything is just spinning through my head. It looks like my immune system is just going through different organs and turning on them, and I was wondering if I had LADA-which would fit with everything else? I do have a high BMI but it's more to do with the fact that I am so not able to do the amount of activity I used to do-even the amount of waking I used to do at work from the office to look for people etc rather than what I eat. I've been keeping a food diary and I really don't understand how my reading are so high. I eat low to lowish carb anyhow and don't eat any cake/sweet stuff to push them up. I know my morphine medicine has corn syrup in it but I don't have that all of the time and it;s a spoonfull at a time.
My mum comes once a week to help tidy and the kids help as well-but no more than they would if I wasn't poorly. Other than that, the kids and my ex popping round which is more for the kids benefit I am alone. I keep in touch with family on facebook and have a couple of friends who are not totally bored of everything who I still see a couple of times a year but other than that I am alone. I miss having the comradery of people at the office and hearing what is going on in other people's lives. I kept working as long as I could-it helped with the pain and gave me a sense of self worth. Now I'm an overweight medical complicaton and someone my son does't want to be seen with i the wheelchair-which I have really really resisted using but now there is no other option and I feel useless-I can't even get up the stairs to the kids bedrooms-I had to have a bedroom and en suite built downstairs-luckily this was done before I lost my job.
Well, if you've read this far you deserve a medal. It has made things a little clearer-but it seems like bed time is the time I get upset about everything and need to talk to someone about it. The kids are too young and I wouldn't go there anyhow, my mum has a heart problem and my sister and the friends I do have have their own families and lives and don't need to be bothered. A couple of year ago I had what I thought was a really good friend, we had been friends for some time (she was even god mother to 2 of the kids) and she encouraged me to talk to her and email or text her when stuff was going round my head-she did the same to me but after a few weeks she told me it was too much and she didn't want to be friends or speak to me again. Now I find it best to not share which is probably part of the reason this all got so big!
Thank you