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Jessicas Mom
New Member


Date Joined Feb 2009
Total Posts : 3
   Posted 2/2/2009 7:06 PM (GMT -7)   
I know this is alot to put out there, but trust me that it's not 1/100 of what all we've been going through. I so appreciate anyone hanging in here with me through this.

My name is Kim, and I'm here as the loved one for someone living with autoimmune dysfunctions...now looking at lupus as well. I'm 45 and my daughter turned 21 this past November. I'm the grandmom of two and am a site co-administrator of a very large mental health online support community.

My daughter was always different. She always had strange/different illnesses and problems. She started her period at nine, had patches of gray hair by eleven and was built like a mature woman, as well as strange pains, illnesses, etc.

When she started her period and shortly after things really ramped up. After her grandmother's passing at 15, all heck broke loose physically and as a result, some emotionally.

Along with all her different problems, she started with a couple of different weird rashes at 16 and started having these "episodes" that she didn't tell me about until she was 18. One rash was at the base of her neck and diagnosed as ringworm. It came and went over the next five years without anyone else getting it or any meds helping...not even her newborn baby getting it. She's always had the red cheeks...always. The other rash was very scary. She would itch really bad at times and blood would literally pool under the skin...once it was so bad on her belly that I couldn't hide my horror when she showed me. We later came to find out that this correlated with the times that her liver was inflamed.

Just after her 19th b'day she found out she was pregnant...while on the pill. At her first OB appt. they asked about thyroid and we told them that she'd tested low a couple of times but not enough to indicate any type of treatment. They did testing and called us three days later with an appt. with an endocrinologist stating that she was severely hyperthyroid.

At that first appt she was dx'ed with Grave's Disease. Her liver was inflamed and she was very ill. He started her on meds but she was incredibly ill throughout the pregnancy and the dr. didn't even consider the baby until she was 8 months. He didn't think her body would maintain the pregnancy. Four weeks early the baby slowed significantly and it turned into an emergency C-section at which brought us an amazingly healthy, beautiful baby boy. That was 18 months ago today.

The endocrinologist said that my daughter's case was one for the books or journals. It was literally a race at the end to get the thyroid out. They had to put her on SSKI just to get her to the surgery and through it. It was very scary but she made it.

After getting things settled down there, things still weren't right.

She still had these "episodes" she told me about where she'd have a weird thought and extreme nausea with weird vision and smell, etc. (I'd just assumed it was some weird side affect of the Grave's). I finally was able to witness these and realized there was a bit of time that she was "gone" and had zero memory of even being gone. During these times she'd do very basic functions or nothing. I realized then that she was having some kind of absent seizure.

Nothing shows up on the EEG or the MRI...both are normal...but yet she's having dx'ed seizures. She also still gets the on-again-off-again ringworm-type rash at the base of her neck. She has mild to severe joint muscle pain. She gets sores on her privates (only twice) and in her nose (I don't know that they're actually sores. She says they don't hurt and almost look like blisters but aren't). She has all kinds of belly and chest pain. She has the rosy cheeks still. She gets swelling in her ankles. Her liver is inflamed for about the seventh time. We don't know about her kidneys at present, but they've been abnormal in urine as well. She has periods of time where she's just over-the-top emotionally...everything is so out of proportion for the given situation and she cries and rages. Now that has gotten some better with the prozac. Just today we had the second appt. with a hematologist because her WBC has been elevated for months now and continues to rise. He did a blood smear and said that there's an inflammatory process going on that the blood is responding to...probably autoimmune.

Her endocrinolgist did tests for both lupus and rheumatoid arthritis due to her multiple organ involvement but said they were both negative.

I know, however, that my daughter has lupus. We are to be referred to a rheumatologist soon. There aren't many close, but I'll travel to another state to get her answers. She's so tired of suffering with no answers. She feels crazy and disbelieved, BUT I BELIEVE HER. I know how she suffers and I'll move heaven and earth to find her answers and relief.

I've known for about a year that she has lupus, but prayed that having her thyroid removed would clear everything up...knowing somewhere it wouldn't. She has just about every symptom there is listed and some things that aren't but I suspect are symptoms that aren't as common and listed as such.

I just wanted to vent, guys. I need support while I try to find the strength to keep her going for herself and that precious miracle baby. The endo said there are no odds to say how she even got pregnant with him, let alone gave birth to a healthy baby. A miracle was sent to save my daughter's life...of that there's little doubt.

Any support, advice for a newbie, suggestions to say/tell dr or other things to look for, etc. would be great.

I'm so glad you're here. I know how blessed and comforting peer support is in times like this and I'm the one needing the support, shared experiences, the works right now.

To anyone who hung in for this, thank you. I look forward to responses and getting to know you and your stories. Don't hesitate to link anything for me that will help me get to know you. :)

JM

Post Edited (Jessicas Mom) : 2/2/2009 7:13:54 PM (GMT-7)


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 2/2/2009 7:17 PM (GMT -7)   
Welcome to our group! Unfortunately, I am at the end of a long painful day, and can't think clearly enough to offer you any support at the moment. But others will be along soon and I'll feel better tomorrow.

We have a lot of active members and I'm sure we can help you thru this,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(15 6mg), Piroxicam, Xanax, Trazodone, Boniva, Wellbutrin, Valtrex

Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

"Life is far too important to be taken seriously." –Oscar Wilde, 1982

 


Jessicas Mom
New Member


Date Joined Feb 2009
Total Posts : 3
   Posted 2/2/2009 7:21 PM (GMT -7)   
You've given great support with few words...I'm gonna check out the links in your siggie! :)

Thanks so much for the quick response and I pray you feel better soon. I appreciate your even taking time for a quick response when feeling badly.

Talk soon I hope.

JM

FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 2/2/2009 8:19 PM (GMT -7)   
Welcome!!

First off, it is wonderful that your daughter has you as a champion for her. This whole process is exhausting and having someone "believe" us - especially when symptoms are not readily apparent makes a huge difference.

Second, DOCUMENT EVERYTHING. Take pictures of rashes, keep a journal detailing symptoms - and when they occurred. Make a list of questions for the rheumy - and if you can, get copies of any medical records to take with you to the doctor appointment.

Lupus is normally a difficult diagnosis to get. For many of us, including myself, it took years and many doctors to get a definitive diagnosis. And, often, lupus does not travel alone. We suffer from multiple ailments. So, we end up juggling several different doctors. For me, it's primary care, allergist, rheumy, and just recently, gastroenterologist. It's important to keep them all "in the loop".

Others will be along to give you more information. This is a fantastic group of people. You came to the right place.
Take care,
Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR.
Daily Supplements: Calcium, B-100 Complex.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 2/2/2009 8:20 PM (GMT -7)   
Hi JM, welcome. I am sorry to hear of your daughters health problems. I couldn't imagine being so young and going through what your daughter has nor could I imagine what you are going through as a mother (((hugs))). You are a great mother for seeking answers for your daughter.

I would suggest you take her to a rheumy that specializes in lupus, sometimes you can find them through your local Lupus Chapter, here is a link www.lupus.org

Lupus is a disease of 1000 faces and no two people have the same symptoms. I am sure you have read that lupus is hard to dx and often takes many years because there is no one test used to dx it. Doctor's order labs, take a family history and rules other things out first. It is like a puzzle that the doctor has to put together over time. Have your daughter make a list of all of her symptoms when they started and if anything makes them better or worse, this may help her doctor, list even the small things. There is also a criteria list that the doctor's use, usually if you have 4 of the 11 doctor's will consider lupus. I pray her new doctor will get to the bottom of her problems and start treating the symptoms as soon as possible.

www.lupus.org/webmodules/webarticlesnet/templates/new_aboutfaq.aspx?articleid=75&zoneid=19

Please keep us posted on she is doing and how you are holding up. You both will be in my thoughts and prayers. Take care
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 2/3/2009 4:59 AM (GMT -7)   
Hi JM, I am not diagnosed with Lupus, but apart of this group for all the support, and we have the same medications for treatment. From what you said, I was able to figure out there for sure is something auto immune in here. Question is what. Her emotions could be something like bi polar, her vision like necrotizing gramultous inflamation, etc. I also noticed her body is like myself. When I get stressed or ill my body starts to shut down. I had a bacterial infection due to bad water once, well my asthma triggered and I had to due a nebulizer treatment 6 times a day to maintain my airway. When I was about 17yrs, I had severe adnomial pain...all tests normal. It was believed "I was faking", that was until I doubled over in front of the xray tech then doubled again in front of the nurse and the doctor. I became a medical teaching case. Guess what I had? Never would guess it...Acid Reflux. Recently I asked the doctor to do a blood test of things on me, he asked why, I showed him my meds list and said "cuz I can get this", he looked and said "ya, but that is rare." I shot him a look and said "look at my chart and see my medical diagnoses there." he did and said "ahh your already rare, i'll monitor you and do frequent blood work." I shot him the look cuz I had recently been diagnosed with a couple rare diseases, rare is like "whatever if anyone is gonna get it it will be me" to me.
 
Smurfy Shadow
 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Depression, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux
 
Medications: CellCept, Prednisone, Tri Nessa, Percocet, Metformin, Prilosec, Protonix, Zantac, Advair, Cingulair, Albuterol, Calcium + Vitamin D


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 2/3/2009 8:21 AM (GMT -7)   
Hi JM and welcome. I'm so sorry to hear about everything your daughter has been through and I really hope the rheumatologist can help. If for some reason you don't like this rheumatologist, get another opinion - not all rheumatologists are equally knowledgeable about lupus. Many of us had to go through several rheumatologists to find one who would really help.

One thing that your daughter has going for her is the support that you are giving her. It's an awful feeling to feel like people don't believe you about being sick or to feel "crazy" and thankfully you are there for your daughter and are helping her get the answers to her health problems.

I know how hard it is to see your kids suffer. My 11 year old son has arthritis and this year, my 7 year old daughter started showing some weird symptoms along with fatigue and pain in her feet. My daughter sounds a lot like your daughter in that she already looks very mature at 7 and already has the hourglass womanly figure. She did have one episode of bleeding that looked like a period, but nothing else since then. Some of her bloodwork came back positive and are red flags for lupus, but not enough to diagnose or treat yet. We are in the watch and wait stage.

I am glad you found this site - there are a lot of great and supportive people here. Your daughter is also welcome to post here too. I hope you will keep us updated on how your daughter is doing. Take care.
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

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 2/3/2009 9:29 AM (GMT -7)   
Hi JM,
 
It sounds like you're documenting her history very well. To remember everything she's gone through from the time she was 9 years old is excellent!  Just having that timeline with so much detail will really help when you talk to the rheumatologist.
 
There's no clear cut blood test to diagnose Lupus.  A positive ANA is helpful, but not necessarily needed. Lots of people get a Lupus diagnosis with a negative ANA and other negative blood work.  You might come across a term called MCTD or UCTD (mixed connective tissue disease, and undifferentiated connective tissue disease).  If it turns out your daughter is diagnosed with either of those terms, it's okay!  Both are treated with the same meds as Lupus. My initial diagnosis was Lupus, but now it's MCTD because I have more than one autoimmune disease going on. 
 
The other members have given you excellent advice. Please keep in touch with us as you progress.  We're always here to listen and guide as we are able.
 
Blessings,
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Moderator for the Lupus and Fibromyalgia forums


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 2/3/2009 11:18 AM (GMT -7)   

Hey JM,

I have nothing more that I could tell you than the others have.  I am not as knowledgeable as some others.   I think it is really good that you never believed that your daughter was faking.  YOur daughter has had a hard path to walk in her young life.  you could be mother of the year, or many years for the way you have been there for and with your daughter.

I hope you will keep us up to date on things as you go along.  I felt like I was lost when I found this group.  I am so thankful I am here.

Hester


Lupus diagnosed 1996, Fibromyalgia diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008, Stroke 11-4-08
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  


Jessicas Mom
New Member


Date Joined Feb 2009
Total Posts : 3
   Posted 2/3/2009 7:27 PM (GMT -7)   
I'm exhausted tonight...had daughter and baby grandboy here all day and we partied. ;)

I'll respond in much more depth later or tomorrow but had to take a minute to say THANK YOU.

Y'all are an amazing bunch of people and survivors. I'm so glad to have met you. We should find out when her appt. with the rheumy is tomorrow. We got another referral today to a female that's supposed to be in the top 10 in the country today and she's actually closer to us, so that's a blessing. We might have to have the referral changed.

I appreciate y'all more than you know. I myself live with a couple of chronic conditions...pain conditions. I live with Trigeminal Neuralgia and Degenerative Disc Disease. I had surgery on my C-spine this past summer which relieved alot of my pain there, allowing for pain meds to help me to a large degree. I have to live with the zaps from the TN. It's my lot in life and something I acquired when I was a young 20. I know what it's like for few to even believe me, and those that did certainly didn't understand my experience. It took me 16 yrs. to get the dx. of TN...16 long years of much suffering, loneliness, isolation, desperation and anger.

My daughter will never experience that from me...never. Nor will I ever let anyone treat her inappropriately in my presence...even a physician. It simply won't happen. We all deserve things in this life as basic rights...one of those things is to be believed unless we've proven ourselves otherwise. It's simply a basic human right and should be afforded each one of us despite reason, difficulty, limitations in understanding, etc. The first thing I noticed here is that there was not one ounce of hesitancy in belief of experience shown by a one of you here. You'll never see that from me either. You immediately took me at face value and saw the best you could find in me. Please know how you all appear to the newbie...the blessing and gifts you all are.

OK, I'm sorry I got on a soapbox there, but back to topic...thank you so very much and I'll let y'all know more tomorrow.

How are each of you today? Is there anything you want me to know about you...anything you'd like to share?

Blessings and thanks,

JM

Post Edited (Jessicas Mom) : 2/3/2009 7:31:36 PM (GMT-7)


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 2/4/2009 4:07 AM (GMT -7)   

Hey JM,

I tend to like soap boxes.  turn there is truth found in soap boxes even those political soap boxes.

I think I laid all my fear out for eveyone yesterday. 

pain is a different matter.  with pain on both sides my body today, limping does no good eyes   lift the hurt toe, to determine less pain on my foot, and lift the right leg because of pain in my knee. 

Glad that you are here
heste


Lupus diagnosed 1996, Fibromyalgia diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008, Stroke 11-4-08
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 2/4/2009 8:18 AM (GMT -7)   
JM, I think one reason we are so supportive here is because most of us have gone through what you described about people not believing us about feeling sick. I've had friends, co-workers and doctors who wanted to attribute all of my symptoms to depression even though I kept telling them that the only reason I felt down was because I felt so sick and could not do the things I enjoyed anymore. People just shouldn't have to go through that. There are some really great doctors out there but then there are the ones you go to where you feel like you have to prove to them how sick you are. Diagnosis limbo is an awful place to be both physically and emotionally.

It sounds like the doctor your daughter was referred to should be a good one and I really hope she can put the pieces of the puzzle together and help your daughter. It's good you are going with her because I know sometimes when I am at the doctor I feel so sick and have so much brain fog I forget to tell him things and forget to ask questions, so it will be good for you to be there to help fill in the blanks.
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

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



nurse2
Regular Member


Date Joined Jul 2005
Total Posts : 229
   Posted 2/5/2009 8:56 PM (GMT -7)   
Dear Jessica's Mom,
I pray that today was a good day for you and your family. We have to take them one day at a time. I too am one of the "wierd" people who have had to "doctor hop" for more than 25yrs. to finally get a diag. I told the doctor that I didn't care if he told me that I only had three days to live but that I wasn't crazy and that I wanted a name to what was wrong with me. I had been tested for Lupus for 20 yrs. and never had a positive
ANA but had 5 of the criteria for diag. This rheumy diag. my fibromyalgia and did his best to help me. I already had degenerative disc disease and osteoarthritis. Since then I have had 4 cervical spinal surgeries and have had both knees replaced. I continue with my daily activities and up until my last surgery in May worked full time. People don't realize how much pain you go through on a 24hr. basis. Please tell your daughter that I believe that her pain is real and that there is a doctor out there that will believe her....just as the people on this web site so. I am new to this site and I have found out great info from these kind people who have been going through similar problems. Please take care of yourself too because as mothers we usually place ourselves last when it comes to health. If you get down, you will not be able to help her. I will say a prayer for you and your family. Good luck.
Nurse2
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