Any other disabled mums-to-be?

[jelr]

Hey guys - dont think I'm really qualified to be here either as I'm not registered as disabled for anything.

I have chronic psoriatic arthritis and fibromyalgia, the meds I was on before was humera (intermuscular injection self injected every two weeks) - steriod injections every 3 months. - arcoxia (anteinflammatories) zydol (painkiller) Amitriptyline and Noctameed for sleeping - Nexium (stomach medication for ulcer) and oral steriods for flare ups.

I'm doing extremely well off the medication as I stopped it all in June 07 when we decided to try for a baby as the injection I was on had to be stopped 5 months before even try to conceive and the docs suggested to stop the rest.

In one sense I was doing better off the meds than on as I now dont have half the other health problems that come with the side effects from all the meds.

But I have found my condition is less manageable since becoming pregnant and I'm find it much hard to get around as I get bigger.

Well that is my story, but i dont have as bad problems as most of you. I do worry by times that I wont be able to care for LO as sometimes when I have a flare up I lose the use of my hands and DH has to feed and dress me, but thankfully this doesn't happen too often.

 

[babystar]

I have never met anyone else with psoriatic arthritis sorry I know its chronic and I shouldn't be so happy about it but I was diagnosed when I was 12 and have never met anyone else with it so have had no one else to talk to about it all.

 

[Seraphim]

It does help to feel like someone else understands eh
Pleased you found eachother here.

 

[soliloquise]

Sorry for posting again so soon with more questions...

I had a visit from a district nurse to assess me for continuing care today.

I suffer from M.E which causes extreme fatigue, light/noise sensitivites, muscle weakness, cognitive probs such as confusion ect.

Anyway, she came in and demanded the main light on (even though the curtains were open and it was bright day-light!) I said no, so she complained and went to stand by the window.

She started asking me questions, like my name, date of birth ect. Then she said "so you can walk, you just like staying in bed all day do you?" I was so shocked! I have suffered from severe M.E for 4 and a half years and have lost most of my life to it, I have no qualifications and have carers for 60 hours a week! I tried to explan the affects of M.E but she really didn't seem to be listening.

She then turned to my husband (who has M.E and fibro, and was lying flat in bed with his sunglasses on because it was bright) and said "do you suffer from health problems too?" It was 2pm in the afternoon and he was in bed with sunglasses on....

I really feel like writing a letter of complaint, or maybe just a letter of concern. She just seemed so clueless and really offended me. There is a wheelchair and commode in my room, she had been sent to assess me for continuing care (which comes after social services have already provided care....) yet she just seemed to think I liked being in bed!!

I wouldn't know who to though as I don't know who is the "boss" of district nurses, or where she's based.

Sorry about the moan. Would other people have found this offensive or am I just over-reacting?

Thanks

i saw this in an email from the dpn i think that you posted? hope you complained... idiots. and yes that is v offensive ! i am having probs with social services at the mo.. amazing how hard it is when you are disabled to get good help x

 

[soliloquise]

Hi everyone,

I was just wondering how everyone is coping with their pregnancy and if you are still on meds, or how your coping without them?

I am struggling pretty badly with pain relief right now. Before becoming pregnant I was taking citalopram (anti depressant), temazepam (for relaxing and sleeping), zopiclone (for sleeping), tramadol (painkiller) and buccastem (anti-sickness.)

I'm now just taking citalopram and temazepam, and struggling a lot without the rest, especially the tramadol. I'm taking codeine but it doesn't do much. I'm currently in agony because theres excess fluid in my womb and its causing a lot of pressure and really really hurting my ribs and upper stomach. It doesn't help much that I'm mostly lay down or sat in my chair.

Does anyone have any ideas for pain relief? I have tried baths, hot water bottles, more pillows... nothing really helps. I have a gym ball but I don't really have enough energy to use it much. The baby is breech, and thats probably also adding to the pain

Thanks, and I hope your all doing well

having similar issues as you with pain here.. and trying to come off morphine b4 th birth for the baby's sake. it is v hard as i like you have all diff types of pain and pregnancy makes it worse. i use tramadol when it is v bad but to be honest it is crap ! i may try some acupuncture and homeopathy after the bank holiday. have you manage to find anything that has helped yet? x

 

[ShadowRat]

has anyone elses disablitly affected the screening they'd have/ have haad???

Not really, Mojo... I mean, at all of my scans they keep checking on baby's heart, as I had a hole in my heart that was corrected via open heart surgery in 2001, but they think (from what they can see so far) that Vincent's heart is looking ok
As for screening for other things, well they have done all of the normal screening checks, but as my type of EDS is the only type (i believe) that has not yet been genetically mapped, they can't test him for this, and we will have to see how he develops to know whether he has it or not. I think I have seen little tooth buds on some scan images, which gives me hope that his teeth may be normal (I really didn't want him having Oligodontia!) but again, we will only know after he is born on that... 50% chance either way with Oligodonita and EDS.

x x x

 

[ShadowRat]

Babystar and jelr, It's so nice, isn't it, to know that not only does someone else know your condition and what it means to go through it, but also is on the same journey through that condition to have a baby! Jelr, I was wondering whether you might post in here honey I didn't want to "push" you (the label of "disability" is a bit scary sometimes!) but I know that you suffer terribly with your arthritis and I know that there are ladies in here who know just what it is like to deal with chronic pain AND be pregnant. I really REALLY admire your amazing courage at stopping all of those meds. I had been at a point before pregnancy of considering "upping" my meds and trying to find a stronger pain medication, but it is amazing what the thought of that little baby in there can do for inner strength. I have suffered more pain that ever through this pregnancy, but somehow it makes me feel "natural". I think my drive to be a mother has always been one of the strongest things in my life, and the positivity in me with these pregnancy hormones etc. is really strong and helping me through

to all, hope you're all having a lovely weekend!

Shadow x x x

 

[littlekitten8]

Armywife - I also have scoliosis which developed when I was in my teens. I suffer from chronic back pain which has gotten worse since being pregnant as the baby is putting more strain on my back. I was referred for physio but cos the midwife (who is a bit of a dippy cow) didnt put on the referral that I have scoliosis I got sent to the back pain in pregnancy group which was a total waste of time! The physio got to the end of the session and said I should never have bothered with it and need one to one physio sessions so have to wait for that now.

I have to say I am very impressed with everyone in here for coping so well and I hope that doesnt come across as patronising! I am barely coping with work with the pain and I feel like a bit of a woos knowing what other people are going through to have their little ones.

 

[ShadowRat]

Hey girlies!! How are we all doing in this lovely thread? It seems to disappear from the front page quite quickly, but that's ok: We all have things to be getting on with, and we can just pop in here whenever we have something to ask / share

My sharing for today:
I had the occupational therapist at my house a while back, and I'm pleased (?) to say that it was quite a different experience to what poor Angel2Fire had with the district nurse a while ago ...
This lady was very nice and very helpful, and no matter how many times I waved things off and assured her that I could manage with this or that, she persisted in getting every little thing that might be of use to be to be considered. She has marked out several areas around our house that will be fitted with grab rails etc. by the technician team soon, as well as listing lots of helpful little aids for me generally (clothing hook for easier dressing, shower seat for more independence, a removable wheelchair ramp for the front door. All good stuff )
But anyway, she came back today (which we were impressed with, we thought she wouldn't be back for at least a couple of weeks) and gave me some bits and bobs to be going on with until the technician team come for the fitting. But she asked me today about how we were planning on managing things when baby comes for going out and about etc. We told her we have a buggy, which OH can use, but then of course if I'm with him then I'd have to self-propel, which isn't ideal with my shoulders as they can be sometimes... We told her we also have a sling for me for when baby is small (to carry and sit in wheelchair) and that we planned to get a backpack for when he is bigger for OH to carry and push my wheelchair.
But she also mentioned the possibility of getting some funding for any other things we might need: She is going to look into the local charities etc. and get back to us. So after she left, we looked up wheelchair / baby / toddler scenario things (lol) and found this...

https://www.bath.ac.uk/bime/products/images/whchbabycarrier.jpg

(Check the last product on this page...)
https://www.bath.ac.uk/bime/products/mt_products.htm#5

I WANT ONE!!!! But it's soooo expensive!! I hope we can hear about some kind of funding etc... This thing would be soooo useful, not just with Vincent (our first on the way) but with future babies, which we're thinking we'll likely be having!!
As far as I can tell, this is the only one available of its kind, and I can't find any second hand on ebay or anything... But if I had the money, I'm certain I'd be getting myself one! I also think it looks pretty cool on the front of the wheelchair, which is a bonus!

Thoughts, girls?

Shadow xxx

 

[littlekitten8]

Wow shadowrat that looks pretty cool.

Feel like I'm complaining way too much but I am getting really annoyed with my stupid physio department. Have been told I need 1:1 physio for my scoliosis and am finding it more and more difficult to walk! I am currently signed off work with stress as I have an incredibly challenging job and deal with death and very sick babies every day. I have especially noticed in the last few days that I am in lots of pain with my back and it is crunching a hell of alot! I have left another message on the physio answer machine to point out I'm finding it more and more difficult to walk and it's starting to upset me now. I just wish they would do something about it whether that means I need a brace or crutches or whatever. Sorry for the rant!

 

[ShadowRat]

Awww kitten, go ahead and rant honey, get it out!!! Keep on at your physio, and maybe ask for an OT referral for some aids etc?? Do you have an OT already?


Shadow x x x

P.S. Have you at least got a pregnancy support belt??? I'm sure the physio should be able to give you that, and for scoliosis I would've thought it'd be pretty vital in pregnancy ... Good luck lovely xx

 

[littlekitten8]

No I dont have an OT cos prior to getting pregnant I hadnt even seen a consultant since I was 13. Had a spinal xray at 13 when they diagnosed Early Onset Idiopathic Scoliosis. Was then just dealt with by my GP. I refused to get a back brace when I was in my teens as I was really self concious and already suffering from an eating disorder. So was never really followed up. I have a pretty high pain threshold when it comes to my back pain and my lower back muscles are pretty much constantly in spasm so I know its bad pain when it actually affects me. I just dont want to get to a point where I cant work, if there is something the physio could do to help me!

 

[ShadowRat]

We were about to get pushed onto the FOURTH forum page!! I couldn't let it happen, ladies...

Everyone doing ok?


Shadow xx

 

[MissyMojo]

i'm getting by, not relli much happening with me at the moment, just getting by, getting some hip pain but paracetamol is taking its edge off for the time being, i'd like something stronger at times but ....

 

[ShadowRat]

I hear ya, honey... Lots of nice warm baths and rest, I say, to try to help ease the nasty pains. I feel like I'm getting pretty huge now, and it is really starting to show in my lower joints and my back
Might have to ask OH for a lovely massage tonight

x x x x

 

[babystar]

Hello beautiful ladies.. I hope u are all well

I have finally been referred to physio for SPD.... they say its minor just now but as I have the joint probs then it is likely to worsen. The only thing is theres at least an 8 wk waiting list for the physio poo!

 

[MissyMojo]

im not too far along so warm baths and paracetamol working so far, consultant said later on if i need to i could try codeine if i felt i couldnt manage the pain

 

[butrfly]

hi everyone! just read through the posts and marvel at everyone's ingenuity.

no, i am not disabled... however, i'm peeking in and dropping a note wondering if maybe you'd like to move this thread to the new forum: BnB Groups at the Lounge Area. That way other moms from other trimesters may have access to the thread & the support it brings to others facing the same challenges.

kudos to all.

 

[littlekitten8]

Well I went to the physio today. She has told me I have hyperflexibilty which is not helping matters and that my spine is very stiff. She has given me some exercises to do.I asked her if there was some kind of support I could use and she said that if I used a brace then my muscles would just get even more loose because they wouldnt need to do any work. She thinks my scoliosis isnt going to cause too many problems and its the hyperflexibilty that is causing my pain. Although she did say I had rotation in my spine which I didnt have before.

 

[MissyMojo]

aww little kitten

im off work today with major back pain!!! im kinda worried cos i dont know if its cp related or pregnancy related or both working against me, im fretting enough atm bout scan next week as im waiting to find out if i was wildly wrong with my dates or if ive suffered a mmc.... this pain is not helpin, i rang my midwife unit who adivsed i take 2 paracetamol and sleep!!! hahha oh i miss my pain meds,.........