UGG...LIFE

Hi, im a 25 year old female, working as a nurse with 2 children. I was diagnosed in 2010 with ITP and Lupus. My count had dropped down to 3. Only real symptom I had was the large bruises on my body in places they usually don't appear (ie..stomach and back). Because not much was known at the time I was told I could never have children..They told me this October 2010. by October 2011 I had my son. They told me don't go to nursing school. It will likely cause an lupus and ITP flare. I was accepted into nursing school Dec. 2011 and started nursing school Jan 2012. I spent many nights studying for exams in the Hospital ER and even left a few times AMA just so I could make the exam. I graduated almost top of my class. They told me I couldn't do it and I proved them wrong everytime. I go into the hospital atleast 3-4 times a year and always stay my 3 day stent. I found out I was allergic to the steroids they were giving me..so I end up taking an infusion once a week for 4 weeks. This last time, back in feb 2017 my count had dropped to 0. Im used to this happening but this time emotionally it was different. I had my second child Nov 2016. Had a lupus flare Dec 2016 and they gave me methotrexate. I found myself in the kitchen holding a knife to my wrist and about to cut. Only thing that stopped me was I heard my baby girl crying. I thank her daily for this even though she doesn't know what she did for me that night. I scared to leave my children alone. I scared that they may find me dead in my bed. That when I close my eyes I may never see them again. I never had these thoughts before. When I would stay my 3 day stent and do my weekly treatments all was fine and dandy. but this time was so much different, and Im not sure how to bounce back from it. My anxiety is threw the rough, I don't sleep at night, Im in constant pain, anxiety attacks I feel are slowly taking my breath...and my life. Im afraid of death. Im afraid it will sneak up on my when Im sleeping and wont be able to say goodbye to my children. I wont be able to hold them, kiss them, play with them, and just be mommy. I love my kids and the only reason I havnt given up yet is MY KIDS. sometimes I feel like nobody really understands what im going through. My family avoids talking about it because they don't know what to say. I don't want your pity, I just want someone to understand.....That's it.

11 Replies

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  • JBUGGIE,

    You have my understanding. I don't have lupus, but I do have ME/CFS and there are times when the exhaustion makes me wonder what the point is of getting out of bed. Depression is, as you obviously know, terrible. The anxiety attacks are frightening. Please don't give up. Find a decent therapist. Getting therapy can be the difference between life and death, and as you already know, your children need you. There are medications that may help. And keep in touch here. There are so many wonderful people here who can provide support and excellent advice.

    Ruth

  • all my love jbuggie, that baby girl saved you, dont let her lose you. Try different drugs for itp /lupus which may help you feel better if this one makes you feel awful. talk, have a therapist. we are all with you. sounds like you have been strong and brave , have some help. all support , life, tough sometimes, take care xxxx

  • Hello JBUGGIE210 !

    Such an inspirational story . Like u said every time u prove them wrong . THATS YOU!! my dear. that is ur strength . Ur kids are your motivation . Don't b upset from bruises . is this cause pain to u?

    My story is that i'm 29 years old male single. I had diagnosed ITP in july 2016 after dental surgery. Believe me only i know how i spent my time period from JULY- DEC 2016, Had almost every test. infusion. BM, etc. expensive drugs. which suck my saving and also make me debitor. ,. my life change totally. But then i realized that its what we are . its how god made us. i had no symptoms like active bleeding or , just bruises .

    i stop taking medicine. n living now again. although i have to take care of my self. Few precautions . Some time blood from nose and some time from stool. but not regularly ,

    U have children divert ur mind to them. dont think about ITP that much. i know its difficult but its not impossible ..

    Have faith on god.

    I think we are special creature of GOD :). Just take care of few things like no injury. etc.

    One thing more. Death is certain , we have to return to god sooner or later. thats our faith. So dont lose ur faith. Live happily with ur children. u r lucky that u have ur motivation. keep playing with them . When the times comes we have to go. so just dont just take it on ur head everytime. Relax and sleep with ur children .

    P.S its very rare (ITP) , even not every Doctor understand it well so what u expect how people will understand this. Luckily my family and friends now understand only this i dont have to bleed. and they show special intention to me. like keep asking me how em and how i m feeling. and believe this over care also irritate and make us feel sick everytime they ask.

    U come alone in this world and you to have to go alone back. and best is u have to walk alone and live alone. one who wants you stay with you.

    may god bless you with countless blessing :)

    Remember me in ur prayers too.

    Have a good day !

    Wahab Saleem

  • Hi

    So sorry to hear that you are finding things so tough at the moment. I have problems with depression and anxiety too and understand how frightening and draining living with high levels of anxiety can be. I have had these problems since I was a teenager (many years before the ITP). My anxiety seems to be linked to my hormones and became a lot worse after the birth of my second child. You have been so strong and positive in dealing with your ITP and Lupus up to now and you say that this time it feels different. Maybe it would be worth talking to your doctor about the possibility of your increased anxiety being linked to postnatal depression? Your description of how you feel is exactly the way I felt after having my daughter. Maybe its not the ITP symptoms returning that is the problem but more the way you are feeling about it? I think that it would be very helpful to talk to a medical professional for some advice. I found medication and counseling helped me a lot and I am well now. Of course, it doesn't help that a lot of the treatment they give us for the ITP, steroids etc make the anxiety worse too!!

    I hope that you will feel better and back to your positive self very soon

    Regards Janet

  • Wow you are amazing

  • Thank yall!!! I really needed the uplift. Im on antidepressants but you know we usually have to go thru several before we find the right one. Amd yes my babygirl saved my life and im forever grateful to her and she doesnt even know it. Ive proved doctors wrong everytime and survived child birth 2 times and after my first i had a spinal fluid leak. Worst headache ever!!! But i made it. I delivered 2 healthy children. Thank god. My faith has always been tested because i always ask the question why??? Why do bad things happen to good people?? I help, i volunteer, i try to do my due diligence but bad things still happen.

  • Try a spiritual life it has helped me throughout this whole ordeal. Realizing i am not in control. You have two wonderful children. Don't give up on them. Fear only torment. Knowing someone needs you should encourage you

    Believe

  • I know im not in control, but my faith has been tested to its limits. I cant seem to understand why bad thing happened to good people.

  • tests are for good people only. Bad one don't qualify for testing though :D.

    So cheer up girl. ur not alone in this world. believe me every one has problem. its called life.

    Pray to god .

    Love ur daughters and live happily.

  • I know everyone has problems. I get the pleasure of meeting so many people with do many different conditions. Im grateful to get up every morning and go to work. I know im blessed but tht dosent stop me from asking questions

  • Keeep questioning my dear no problem at all :)

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