View Full Version : introducing myself (sorry this got a little too long)

05-16-2008, 09:51 AM
Hi my name is Jackie. I am 26 years old and I have a three year old daughter. After I had some blood work done a couple months ago, i was told that I may have lupus. I finally have an appointment with a rheumatologist next week. This comes after years of me complaining of chronic joint pain. I was even put into physical therapy last year because I had lost most of the range of motion in my left arm and was starting to lose more in my right arm. I visited a website after my visit but it took me about a week to go through it because I am experiencing extreme fatigue and fell asleep while reading it. I began having trouble staying up in class and walking which is why I decided to go to the doctor in the first place. I discovered that pregnant women with lupus can experience pre-eclampsia and also miscarriage, I have had both. During the successful pregnancy I had lost forty pounds in the first five months and was seeing a doctor weekly but over one weekend I suddenly developed eclampsia and was put in the hospital where I stayed until they decided to induce my labor 9 weeks early. I have also experienced major skin problems all of my life that were attributed to allergies. I have had so much pain in my life but because of my age( I was ten when I first started to have arthritis pains) I was told its just growing pains. I am kinda glad that I finally know what its wrong with me. So many things that I have gone through are now starting to make since, but at the same time I am worried about what will happen next. My main concern is how can I take care of my daughter when all I seem to be doing now is sleeping and when I am woke i cannot not play with her because I cant stand up without this horrible pain in my back and sitting upright requires alot of effort. I am hoping I get more answers at my appointment next week. Until then any advce on how I can stay up long enough to take care of my kid and any other information that could be useful to me would be greatly appreciated. Sorry this ran so long guess I just needed somewhere to write out what im thinking

05-16-2008, 11:22 AM
Hugs jaideni,

Take a deep breath, you're going to be okay. You just starting on the path to find out...and I know it seems like it takes forever. Once your rhuemy gets to examin you they will start helping you to get your life back. It wont be picture perfect, there will be issues, but you will be better than you are now.

There are lots of mom's on this site and I'm sure some of them will be along to welcome you soon. Hugssss and keep the faith, glad you found us.

I'll check in later with more, but I have to leave it at this for now :)

05-16-2008, 11:44 AM
Hi Jackie,

Welcome to this site. I'm glad you found it. Many others will be along soon to wecome you and share.

You've been thru so much and I'm sorry for your extreme pain. I'm sending gentle HUGS your way.

I'm Lori. I was diagnosed at age 18 and have lived with Lupus for 26 years now.

I've been thru things very similar to you. I had a miscarriage at age 23. Didn't even know I was pregnant. I went into the E.R. with a kidney infection and after an ultrasound was told (by 2 young male medical students) that I was pregnant. It was a total surprise to me. I was admitted to the hospital and within hours started miscarrying. It was such a traumatic experience. I cried for days.

I also had Pre-eclampsia (which developed into Eclampsia and HELP syndrome) with my second pregnancy. My daughter was born 6 weeks early. I had severe morning sickness thru the entire pregnancy and steadily lost weight the entire time. I was only 105 lbs. when I started the pregnancy, and after I delivered, I was 71 lbs.

I understand you're feelings about how do you care for your young child when you can barely stand up or take care of yourself. It's such a helpless, frightening feeling. Do you have ANY help or support from family or friends?

I went thru both of my pregnancies in a lot of pain because I needed both of my hips replaced. Afterwards, one of my biggest challenges was how to keep up with the needs of my children. How could I play with them if I couldn't even stand for very long, or sit comfortably for that matter? It's really hard when they're very young and so very active. Is your daughter an on-the-go, never slows down, kind of 3 year old, or is she happy to slow down and sit with you for awhile? I had one of each. My son never stopped, my daughter was more easygoing and loved to sit and read or color, or play with her toys.

One thing I did from the start, with both kids, was talk openly, in simple language that was age appropriate, to explain that "Mommy has to take it a little easy today", "Mommy has an ouchie in her knees today, so let's sit and play tea party or build blocks or legos". I must admit, there were times I got tired of hearing myself say it so many times to them, and wished I didn't have to, but now my kids are 16 (son) and 12 (daughter), and they tell me openly that they never resented that I couldn't keep up, they never thought of me as 'different' than other Mommies, because that was the way it was, they grew up with it so it was 'normal' for them. They were glad that they had a Mommy that loved them.

One thing I remember doing when I was bed-ridden at times was to keep a bag or box of toys that could be played with on my bed, like coloring books, paper to draw on, books to read to them, we had a great collection of plastic farm animals and plastic bugs and snakes, little things that would entertain them for hours, and they would sit on my bed and play with me. I bought them both folding lap tables (like the breakfast in bed trays) to do crafts on. We began to collect things like construction paper, glue sticks, felt, yarn, leftover greeting cards, pipe cleaners, etc. and we would 'create' all kinds of things. I would make little sack lunches for each of us and put them in the fridge in the morning, and we would have a 'picnic' right on my bed, crumbs and all. They thought that was so cool! 8)

I know there were other 'tricks' I used to cope, and as they come back to me, I'll share them with you in future posts. That's the one that came to mind quickly when I read your post. I know there's a lot more to caring for a young child than just the playing and entertaining part, much much more. Preparing food, giving baths, keeping them in clean clothes, and on and on. If I recall things that helped me, I'll be sure to share them.

Again, I'm so sorry you're suffering greatly. I hope you get some relief soon. I'll be praying for that.

Please know that you are NOT alone in this! There are many of us who 'understand' exactly what you are going thru and we're happy to give you a 'shoulder' to cry on whenever you need it.

I hope today is a better day for you. :D



sick n tired
05-17-2008, 06:49 AM
Hey jaideni ,

Welcome to this forum...glad to meet you.

No need to apologise for the "long" post...I have had some much longer...anyway here you can vent and nobody has a cow over it.

I, also, have had symptoms for years before any doctor was able to come up with anything other than the pat answer "its all in your head, so here take an antidepressant." :mad: Burns me up....

Chronic fatigue is one of the most irritating symptoms and many of us have that one. The fog is another one. I find when the fatigue is at its peak with me then that is when I am the foggiest.

As far as taking care of your daughter....do you have family around you or friends who could come over and help when you are at your worse?
That would be what I suggest or at least hire someone for a few hours a day. Of course, that is if you have the money for that expense.

Well...again allow me to welcome you,


05-18-2008, 10:22 AM
I just wanted to say thank you to everyone. I have gotten some useful advice and I feel like I fit in here and that there are people who understand what I am going through. I only have three family members here and they live across town with gas prices its hard to get anyone to visit and vice versa. I thiink the best thing would probably be to send her back to daycareits a little far but atleast I know she will get wht she needs, I will be able to slepp and maybe less frustrated I just need to reorganize my budget but I feel like it will be best in the long run. I am hoping I get more help with the fatigue when I go to the doctor on wednesday. My regular doctor gave me something to put me to sleep all night with hopes of me not falling asleep in the day but thats not working. Also I just want to say to the person who mentioned antidepressants OMG I know all about that and I think its the most horrible way for a doctor to get out of finding a cause. I have tried three different meds and they all caused severe depression and nightmares neither of which I had before taking them. Anyway I like it here you guys are great and reading posts from others is really helping me understand whats going on with me. I'm so glad I found this site.

05-18-2008, 12:28 PM
Hi Jackie,

I'm glad this site has been helpful to you. Reading others posts does bring a measure of comfort, knowing you're not alone in this. It definitely helps me.

I'm so sorry you've had so much pain so far in your life. Age 10 is so very young to have arthritis and be suffering. :cry: That's when you're supposed to be a kid, having fun and being carefree.

If daycare for your daughter is an option and your budget allows it, that may be of great help during your days, so that you can get thru the activities you need to care for yourself first, like taking naps. That way you'll have more energy to care for your daughter when she gets home.

My fatigue has been unbearable at times, and I've had to learn how to 'budget' my energy. Several years aso, I was blessed to make my way to a therapist who also had Lupus. She was a Godsend. She helped me learn how to view my energy as a big, glass goldfish bowl of energy marbles that was full at the start of each new day.

Everything that I did thru my day took my energy marbles away and when the bowl was empty, my energy was 'gone' for the day. She helped me start to see the places where I was wasting my energy. Things like getting mad at people in rush hour traffic, trying to get thru all my loads of laundry in 3 hours, trying to run all my errands in one trip, etc. I learned how to decide where I wanted to use my energy marbles for each day. Now I live one day at a time and budget my energy carefully!!

I hope your Doctor appointment goes well on Wednesday. Let us know. Perhaps he/she will have some other options for dealing with your fatigue and sleeping difficulties. I'll pray for that.

I hope today is a better day for you, Jackie. :D



05-18-2008, 12:48 PM

Good luck with your doctor's appointment ... let us know how it works out for ya.

:) glad you found us too.

05-18-2008, 02:47 PM

Welcome to our little home on the web. Glad your here.
Hope you get some answers on Wednesday.