am i the only one? a little off topic but not really since the root behind my question is lupus.

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Date Joined Sep 2005
Total Posts : 2573
   Posted 10/12/2008 11:58 PM (GMT -6)   
I was wondering if anyone else ever questions their ability as a parent because of this darned disease? I slept most of this weekend and my husband cared for our son. I get so little uninterrupted sleep during the week because even at 5 1/2 months old our son still doesn't sleep through the night curtosy of his reflux that I take advantage of the weekends. I know it isn't entirely fair to my husband but I feel so much better after getting 10-12 hours of sleep straight. Heck getting 7 hours straight is wonderful but the 10-12 hours I get on weekends does so much for me. During the week I am lucky to get 4-5 hours in a row which is the longest stretch my son sleeps. Any ideas because I am at a loss on how to get him sleeping longer. He has to be on a 45 degree angle and the doctor says no to letting him sleep on his tummy even though he sleeps better that way.
There is a 20 minute to 2 hour period every single day now when he cries and I can't do anything to make him happy. He isn't colicy, but darned if I know what to do for him during that time so I have taken to walking away after making sure he is in a safe place. I feel like a failure for doing so but darn it all, I can't risk getting frustrated when I am so darned tired. Tired and frustrated moms make stupid mistakes. I will not risk making a stupid mistake. I often wonder if it is because he is so advanced that his mental abilities have outpaced his physical ones. He has met all but 2 9 month developmental milestones and half of the 10 month ones as well. The ones he hasn't met are physical things his body just isn't ready for (sitting on his own and such things) I do my best to keep his mind stimulated but the truth is I am also trying to avoid pushing him before he is ready for things. Which basically means I don't introduce anything above his physical age level toy wise. I read to him and show him pictures and occassionally let him watch educational tv when I am at my wits end.
Does anyone have any advice or know how to make this easier? I am afraid I am failing him in some way, worse that because of my disease and how I am doing that I will not provide some critical thing he needs developmentally be it physical or mental development. I don't want to hold him back any more than I want to push him but I feel like I may be doing just that.
Do others feel like they are somehow inadequate to the job of being the best parent possible because of this disease? Would I still feel this much doubt about my ability to be good enough for him if I didn't have the problems I do? What can I do to make up for the fact I can't do things like get down on the floor and play with him? Will he resent me for having the health problems I do? I hate feeling so unsure of myself as a mother when I know logically I am a darned good mother, that I am even better at being a mother than I am at being a student. Given my recent school preformance though I begin to doubt my abilities as a student as well.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements

Regular Member

Date Joined Aug 2008
Total Posts : 56
   Posted 10/13/2008 9:29 AM (GMT -6)   
Well, take a deep breath and remember your only as good of a parent as you believe you are. We have all heard our parents say "I did the best I know how". Do the best you know...Your right to walk away, I have done it many times:) I was sickest when my daughter was older than your child but I do know it was not a safe situation...she wreaked some havoc! Fortunately, my father realized the difficulties I was having and moved in with me to help out. My daughter was very slow with her physical milestones...18 mo's to crawl! In the grand scheme of things, I learned that those milestones are simply predictors of issues to watch for...not guarentees of your childs future success. Be aware of them but not consumed by them! Each child progresses at thier own pace. My daughter will be 8 in December and she has become very self-sufficient for her age. I have been guilt ridden by this but learned to get over it. Id rather her be self-sufficient than starving!

Do the best you know how! Rest every time you can. I'd like to say it will get easier as the baby gets older but there is only so much truth to you handle it!

Good luck and believe in what you decide is best!
31 year old mom of 1: SLE, UCTD, FM, Arthritis, Reynalds(?), Migraines, Alopecia, Neuropothy(L:Hand & Foot), Int. Bells Palsey, Costrocondritis(?), a bunch of other stuff I don't remember right now and even more labwork I dont understand! Patient at Johns Hopkins in Baltimore, MD.
 Plaquinil, Trazodone, Lidoderm, Percocet for now...I hate taking the meds!  Refusing any more Prednisone!

Regular Member

Date Joined Jun 2008
Total Posts : 363
   Posted 10/13/2008 10:43 AM (GMT -6)   
I have two boys 6 and 15 months. The baby still sleeps with me because that's best to get as much sleep as possible. I try to rest when the baby takes a nap, but I always feel guilty that I should be playing with my 6 year old more. For a while, I was really beating myself up for what I just couldn't do, but now I try to take pride in all that I can do. My boys know that I love them, they are reletivly clean, and well fed. The house is decent if not immaculate and even my two dogs and one cat are well cared for. I wish my DH was as good as yours for taking over now and then, but mine is a baby idiot. He can't get him to sleep, change a diaper or even give a bottle. He does great with the 6 year old and takes him out on the weekends and then I get to nap with the baby. Having young children and Lupus is difficult, but try to keep in mind all of those women with Lupus that have so much trouble concieving and carrying a baby to term. Every time I look at my big bouncying baby boy who is healthy as a horse, I thank God. They will have a fine life with Daddy to take them out to play and Mommy always ready to give snuggles and hugs. I read somewhere once that children who grow up with a sick parent are more compassionate and independent. I know that God has a plan and that somehow my children will grow up to be strong and caring people. Like SSDore said, trust yourself and like my pediatrician always says, "feed 'em, love 'em, watch 'em grow." God Bless.


PCP DX Lupus and Fibro, Taking plaquenil,  Flexeril,Claritin, Zantac,Ambien,vitamin B-12, multi- vitamin, Lortab.  Homeschooling Mom of 2 boys 1 and 6.  Symptoms: Fatigue, joint pain, heat/sun sensitivity, mouth and nose sores, malar rash, migranes, awful hives, positive ANA, and RF.



Veteran Member

Date Joined Jun 2008
Total Posts : 675
   Posted 10/13/2008 11:20 AM (GMT -6)   

Redrose, your signature indicates you're really dealing with quite a lot!  There are lots of moms out there who don't have any medical issues at all, struggling with the same sense that what they are doing may not be enough! 

The others gave you excellent advice and counsel, and I really don't have much to add, except to commiserate with the time of day when you can't quiet the baby, no matter what.  I had twins - and it seemed to never fail, that no matter what kind of day we'd had, good, bad or indifferent - at about 4:00 they would start crying and nothing I could do would get them to stop.  More often than not, when my husband arrived about an hour later, we'd all three be in tears, exhausted and cranky.  Usually, by 6:00 we'd all recovered.  We dubbed it the "arsenic hour" (even though it often extended to two).  It eventually passed - although,even 29 yrs later I think we'd all three agree 4:00PM is not our finest hour! tongue

Your son is progressing beautifully!  You could probably use a little TLC, however.  Is there someone who could help you from time to time during the day - family, friend, willing teenager?  Everybody needs a little help now and then - so I hope you won't be afraid to seek it. 

I made tons of mistakes.  Everybody does.  It's the preponderance of good that you do and the soul deep love that you give, that makes all the difference.  Hang in there, and never forget the wisdom of the flight safety instructions - make sure your oxygen is flowing before turning to the child or person next to you to ensure theirs. 


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 10/13/2008 12:24 PM (GMT -6)   
((((redrose))))) Hang in there. First of all, know that you are doing the absolute best you possibly can - that's very clear from reading your post. I don't have any easy answers for you. The only thing I can offer is to tell yourself "this too shall pass". It's really hard right now, but it won't go on forever. Alexander will sleep through the night - sometime in the next few months you'll wake us surprised finding that you have gotten 7 or 8 hours of sleep instead of 4 or 5 hours. And sometime soon you'll find that he's more content later in the day. I kept telling myself that, especially with my daughter when she was an infant because she had reflux and was also very fussy in the afternoons. I agree with you that when Alexander gets more physically developed he'll be happier. That happened with my daughter. Once she could sit up and grab toys and play, she was a much happier baby.

Hang in there. Everything I have ever read said it is fine to walk away from a baby who has colic if they are in a safe place, so you are doing fine.

Jennifer, I can relate to the whole baby/toddler sleeping in bed with you. With my son (I was healthy when he was little) he always slept in his crib and his bed. I got sick when my daughter was a toddler and she often still sleeps in our room (on a sleeping bag on the floor) because it's just easier sometimes and I tell myself that she is not going to want to sleep in our room anymore by the time she's a teeneager. I've really decided that I need to save my energy and pick only the battles that I think are very important.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 10/13/2008 1:29 PM (GMT -6)   
Thank you all. Last night was especially bad and I was already feeling guilty because I had slept most of the weekend away. I got hit with another blow today but that is something requiring its' own topic. I actually am pretty sure I am doing better this time around than I did when I was 17 and 20 with the older 2.

Jennifer, I myself had multiple losses including losing two children in early infancy so I know exactly how blessed we are to have our little one and have him be as healthy as he is. He was a highly planned baby. What we didn't plan was a serious CNS lupus flare before he was even a year old. It has left my confidence in myself as a parent sorely tested.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements

Audrey Ann
Veteran Member

Date Joined Jul 2005
Total Posts : 815
   Posted 10/13/2008 9:23 PM (GMT -6)   

Try not to be so hard on yourself. We all do the best we can for our children and there is not one, right way. You are actually doing better by your son if you take care of yourself so try not to worry about your need to catch up on sleep on the weekends.

When my son was colicky, I found that taking him for a long, quiet drive in the car while he slept in his carseat was the only thing that calmed him. As soon as he started to whimper and before it became all-out painful crying, we would put him in his carseat and start driving. I know gas is expensive but it might be worth it if you can have a peaceful experience for everyone. We actually did this for months before the collic subsided. I don't know if this will help your situation but it might be worth a try.

Good luck to you, my friend, and try to hold back any guilt you may have about being a perfect parent. Just keep doing your best, sweetie, and it will all fall into place. This time of childhood goes too fast so don't waste it with another minute of worry!

Audrey Ann
Lupus, RA, and (Maybe) Fibromyalgia and LOTS of Medications!


Veteran Member

Date Joined Dec 2005
Total Posts : 1950
   Posted 10/14/2008 8:20 PM (GMT -6)   
It's so hard with little babies. I didn't have too much trouble with mine because I could nurse back then. Burping my kids was always hard, especially with my youngest because hehad a very slender throat, according to the docs. I got to the point I had the doc show my husband and had him do it mostof the time. I had an old fashioned doc who told me toput rice cereal in the milk at night, so my sons slept through almost right away. But you can't do these things with Alex, so you have it extra hard.

Because you are worried about being a good parent tells me you are one. I know you've had it really really rough, not just with Alex early on, but withthe day to day,which I understand because I'm in the same boat. I hope your hubby can give you some time to rest and know that you are doing the best you can and in my book are pretty much superwoman!

And don't let the old hormones get to you, either. You are doing great, you did a great job pushing through and getting a good diagnosis for Alex and you are doing just fine, except that you deserve a huge Hawaiian vacation with a takealong nanny!

Much love to you and your family. Try not to let thnigs get you down. And try to rope in others to help. I know you'll get through this just fine, I have faith in you. Youare really really strong.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 10/17/2008 12:49 AM (GMT -6)   
canuckgirl, I am sorry you decided it would not work to have a child. My mother was no mother at all- horror story parent. I do know that love is one of the most important things for a child to have. I have no idea if your mother made it clear she loved you or if you felt that was lacking somehow. I decided that having my husband around and with all the love I have to give that my son would have more than many other kids out there. I actually plan to home school him because of my own frustration with public schools and watching my nearly 14yr old being held back in some areas and pushed too fast in others. She hates school now. I figure I may not be able to play like some moms do but the truth is most parents today don't spend enough time with their kids let alone play the way that I feel bad for not being able to. When I am not feeling especially guilty because of a rough night I know that I am a better parent than 60-80% of the normal moms out there who think that they will have more time when their kids are older or after they make more money. I am not rich and I have fragile health but I do have time and love to give.

Audrey Ann, I wish my son liked car rides. It would make life easier. Since our trip to Virginia in August he thinks his car seat is a torture devise. Car rides bring out the worst fits. I hate being in the car anymore. Irnonically Alexander has had rice cereal in his formula since he was 2 weeks old because without it he cannot hold anything down. The problem is he can't take more than 5-6 ounces at a time when other babies are taking 8 ounces by now. He throws up if we try and give him more. For 3 months he could only have 2-3 ounces at a time so this is a huge improvement.

I am looking forward to the weekend because I feel so ill now with the new meds that I have trouble feeding him. My daughters both describe his formula as smelling like vomit BEFORE he eats it. It smells worse when he burps or it comes back up. I really wish I could have nursed him but even if I weren't ill it would be ill advised because he can't handle milk or soy based formulas. He has that nasty and expensive hypoallergenic stuff.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements

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