I'm loosing it

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Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 6/13/2009 10:43 PM (GMT -6)   
HI All:
Well I've had my first dose of Remicade and man it's kicked my rear end.  I had the infusion 8 days ago and I still feel like I've been run over by a moving train.  I'm not sure if this is a normal reaction or not.  I'll have another dose of the stuff on Friday the 19th.  So I'll see how I feel then.
Then to top my feeling overall rotten, we received the news that my daughter has my genes and it's looking like she'll need to go on plaq and elavil.  She's been deeply depressed of course I'm worried sick.  She's only 16 and has only memories of me being ill and handicapped with things.  According to her, her life is over and not worth living anymore.  I've been so worried I've made her sleep with me the past few nights. 
I'm feeling overwhelemed, picked on, singled out and overall don't understand why me.  As most of you know, I'm not just fighting lupus, and RA.  But I've got Fibro and blood cancer mixed in with my list of illnesses.  I pray each day that it brings me closer to the day that I'll hear the words from my docs that it's time for the transplant.  I can't help but think that it may help with the lupus and RA too, in addition to the cancer. 
Between Nikita and myself I feel like just throwing the covers over our heads and doing like she suggests and never get out of bed.  Of course the Mom in me knows that I need to set an example and show my daughter that there is life after a DX of MCTD.  Well she'll be seeing loads of docs over the next couple of weeks and I'd greatly appreciate any and all positive energy that can be sent my way.  I'm not up to dealing or handling anything stressful or energy consuming.  Well that's the update.  I hope you all are doing better than I am.  Thks for being there as usual for me.
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.

Regular Member

Date Joined May 2007
Total Posts : 482
   Posted 6/13/2009 10:50 PM (GMT -6)   
Oh Barb, I am so sorry. I know that worrying about your daughter is worse than everything else combined. I will be saying prayers that things start looking up for both of you.
Take care,

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.

Regular Member

Date Joined Jun 2009
Total Posts : 66
   Posted 6/13/2009 10:59 PM (GMT -6)   
You and your daughter will be in my prayers!

From what I have read on transplants (and I'm an RN in the oncology/bone marrow transplant/infusion areas) the doctors are really starting to look into transplants for lupus patients. I've only read a couple of articles on the topic, but hopefully it would be able to help all areas of your health. It will be a tough thing to undergo, but it seems from what I'm reading that you have tons of strength.

Again, you're in my thoughts.


Regular Member

Date Joined Jan 2006
Total Posts : 395
   Posted 6/14/2009 8:04 AM (GMT -6)   
Dear Barb,
It looks like you guys are this together for the long haul. Remember that it is ok to feel picked on and sick and tired of being sick and tired. You both need time to wrap your heads around your mother/ daughter illnesses. There will be days that are better. It is good that you can share with us here. We know. And if we don't, exactly, we can imagine! yeah Maybe you and your daughter could journal together. I teach high school, and boy, do I understand 16 year old angst!!!(*&*(^(&^(%&^%(%%$$%$%#$#@&%*^&*) You poor mom! Ok, that said, when I have to help my kids get through something unpleasant, we make a plan. I even put time to complain and whine on my board. Then we pick a day to be "over it" and then we brainstorm suggestions as to what we could do to fix whatever it is, do some extra work, and then budget some time for a treat or special event, the same strategies I used when my girls were teenagers and dealing with my lupus diagnosis.  Maybe they might work for you? My daughters are now 30 and 24, so the teenage years are survivable. I am LIVING PROOF! and some days are toughter than others. Your "little" girl will have to come to terms with this herself. It is NOT on you. She is not 3 years old anymore. And nothing you say will change her mind and the words out of her mouth. You can only teach coping by example. Repeat after me... I am here for you and you know I love you and you are important to me and I will do whatever I can to help you get through what we MUST get through. Cuddles in bed and hot tea and acceptance of whatever she says are a good start. Try not to act scared by her words, (perhaps said for shock value to see your reaction?) but validate the anger and depression causing them. Keep us posted and keep your courage up, I truly wish I could say something that would help,
hugs, suetoo

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.

Regular Member

Date Joined Jan 2006
Total Posts : 395
   Posted 6/14/2009 8:10 AM (GMT -6)   
If you lose it, we will help you look for it!

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.

Regular Member

Date Joined Oct 2007
Total Posts : 323
   Posted 6/14/2009 9:55 AM (GMT -6)   
Barb, I'm sorry you are both feeling so down, I hope they will give you an answere soon so you don't have go threw so much stress waiting around. I know what Nikita is saying about staying under the covers and don't what to get up I felt that way many of times. I hope Nikita won't get as bad as some of us.I wish you both well my throughts and for both of you. Take Care
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 6/14/2009 10:41 AM (GMT -6)   
cry cry cry (((((Barb))))) cry cry cry

You poor dear. Your load was already too much to handle and now this. I love Sue's post, and by the way, Sue, you sound like a dream of a teacher. I hope Nikkita understands that you have many more medical issues than she does and that she may never develop a serious AI disease. And chances are slim to none that she'll develop MDS. I urge you to pound into her sweet head that she's not going to end up as sick as you are. You don't know what the future holds, but you do know that she needs hope and encouragement. The first thing I would do is arrange for her to talk to someone outside the family, whether it be a school counselor, clergy, or a therapist. She must be terrified. I know you're doing all you can to help her but you have yourself to deal with too.

Take care of yourself sweet Barb. I'm sending all the love and positive energy I have your way. And a cup of Rosie's hot tea as well.


SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex

Veteran Member

Date Joined Jun 2008
Total Posts : 1470
   Posted 6/14/2009 1:02 PM (GMT -6)   
Hey Barb! I am so sorry about Nitika...please remind her that it was caught early! That is a great chance docs can keep it well controlled! Sounds like she will be kept under a closeful eye which will also be great...I am sorry you are having a rough time, I am sending lots and lots of prayers and hugs your way!



21 years old...Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel

Ultram, Prednisone, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

Julia Hill
Veteran Member

Date Joined Mar 2008
Total Posts : 562
   Posted 6/14/2009 9:47 PM (GMT -6)   
(((hugs))) for you and (((hugs))) for Nikita.  First of all, the Remicade will make you feel tired for the first couple of infusions.  I think it is a combo of the benedryl, MTX and your body adjusting to the meds.  You will feel better, but it will take 3-6 months (it did for me anyway). 
As for Nikita, whar exactly does she have?  I know the fact that it is Nikita is very upsetting, but I have been reading your responses to other patients for a while now, and I know that you are very knowledgeable in all of your illnesses, and Nikita is lucky to have you in her corner.  I'm sure she is scared right now, and she will grieve, but then comes acceptence. 
I will phone you my friend, always know I am here and I understand.
Love Julia

Regular Member

Date Joined Aug 2005
Total Posts : 215
   Posted 6/14/2009 10:12 PM (GMT -6)   
Im so sorry your going through so much. My thoughts will be with you, your daughter, and your family.

sle 92, fibromyalgia 95, t4 fracture 06, hyperthyroid with nodules 05, pernisious anemia 04,
? lupus vasculitis lungs, osteoporosis, c3-4 t1 herniated disks 00, gerd, depression
APLS, hyperthyroid, thyroiditis, complex thyroid nodules, asthma, stiff heart with 4 valve regurg., hemolytic anemia, supraventricular tachycardia
meds:prednisone, plaquinil, imuran, hydrocodone, flexeril, ibprofen, asa, fosamax, prilosec,

Veteran Member

Date Joined Jun 2006
Total Posts : 1650
   Posted 6/15/2009 6:07 AM (GMT -6)   
(((Oh Barb))) You must be stressed to the breaking point. I sure hope that if Nikita has an AI disease, it's a very mild case and easy to treat. She may be one of those folks who have a short flare every couple of years and it's no big deal. I gotta go now. Love ya Sis! Donna
Systemic Lupus ('05), depression, fibro, sjogrens, cns issues, diabetes, gerd, hypertension, IBS, stage 1 kidney disease  Rx: Cellcept, plaquenil, prednisone, celebrex, lisionpril, actos, lipitor, nexeum, prozac, seroquel, wellbutrin, xanax, ambien, neurontin, tylenol arthritis, flexeril, nasonex, phenegren, vitamins, Acupuncture.  "Welcome to lupus, where the strange is ordinary and nothing is normal." Donna 

Veteran Member

Date Joined Aug 2005
Total Posts : 590
   Posted 6/16/2009 7:32 PM (GMT -6)   
Hi Barb,
I am so sorry you and Nakita are having a rough time. :(  I remember being dx at age 8.  It sucks you two are struggling and I am sorry for that.  On the good note, there is much research in the way of bio-medical medicine and I have to say we are seeing me improve.  I think its worth checking into and I hope maybe this willl help give you some optimisim for the two of you.  I know with the stuff I am on, I feel loads better.
sle 01 w/autonomic 11/05, photosensitive 04/04, sjogren's 01, ra 01, fibro 8/05, sinus tachycardia 6/04, asthma 96, allergies 6/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06-gone, TIA 5/06, Porphyria 5/06, Vitamin D def 4/07, Iron def ferritin 8/07, Chronic migraines 01.Meds- baclofen 20 mg, prenatal tabs, potassium, vit D 50,000, qvar, xopenex, singulair, plaquenil 400 mg, tramadol 50mgx3, motrin 600mgx3, famotadine, darvocet 100x2 prn, amitriptyline 25mg, maxalt, topamax 150mg, tigan

Regular Member

Date Joined Nov 2008
Total Posts : 106
   Posted 6/17/2009 3:40 AM (GMT -6)   
Hi Barb, I had the same feelings your daughter had that life was over and I have to tell you I'm so glad I went to see a counselor. It worked wonders as well as being on here. It does help to talk I didn't believe it before but I do now.

The best of wishes to you and you daughter.
DX: IBS 00, +ANA 05, Depression 06, MCTD & Sjogren's 07, GER 08, NO Sjogren's 09, Fibro and all over tendonitis?????  
Life is what you make of it.  Just something I try to remind myself every day.

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 6/17/2009 9:39 PM (GMT -6)   
Hi sweetie, I'm sorry I havn't answer ya or chated on the phone. Thank you for answering the phone for me today. I was about to start blubbering and had to go but it was good to hear your voice. I agree with with Bry, about talking to someone. not just nakita but you as well. I know how you are you are laying all this blame on yourself. I think you have quite enough to handle without doing that to yourself. I won't nag well at least no more then you nag at me. How are the tests going? I'll call ya tomorrow.
I actually have a day off.
love ya and praying for you guys
 scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, provigil 200mg spirivia,aciphex,lasix ,pot.chlor.,B12 ,iNDEROL
Bear ye one another's burdens
Galatians 6:2 KJV


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