Morgan, please be careful. I hope you get some help very soon. Prayers and blessings! Reet
Morgan said:
Destiny, how are you doing today?
latina, Destiny - drove myself 1 hour to hospital when 7 months pregnant, fever of 104.2, double pneumonia! They wanted to admit me, but with other children at home, and my mama with us, end stage 4 cancer, not an option. m heart goes out to you for all you have and are going through. please rest and feel better soon. prayers for you as well.
tried to get at least bloodwork ordered by phone today - dr office always nuts on Mondays. today really tough, so hitting urgent care tomorrow, dealing now with chest pain and shortness of breath, but nothing like when I had clots and P.E.s before. will see. have laptop, can pack light if have to be admitted but they WILL send me to teaching hospital, far better care there.
Latina said:
I have driven with a collapsed lung. my prayewrs are with you at this time.
Destiny Scott said:
Sorry about the typos. If you have a car, I know it's hard bit you may have to take yourself. I know it sucks. I have driven myself many of times, even in labor. I know it is taking a risk and if you don't feel it's best for you then please at least call an ambulance and get someone to drive you home. You really need a cbc to check your blood platelets because of your bruising. I did that and found out I was bleeding inside due to ITP or low blood platelets. This is a serious issue that can't be ignored. I don't want to scare you, please understand. I have beem there and thank God I went to the doctor. I will keep praying for you. Get well girly and stay blessed.
Morgan, I am also trying to get into a teaching facility to see if I can get some better help. My surgeons have totally kicked me to the curb because they feel they can no longer help me. Finally got a name of a doctor and after I have already been in such pain for 5 weeks...they tell me that they cannot see me until the end of June. I so try to be a positive person but some days I just need to pull the covers over my head. Hang in there.
Reet, try getting yourself a mask dear. I know most places have burn bans on because of being in city limits or drought. Check into it if you can dear.
Auntpearl, sorry you are suffering too dear. I know we have to be careful but have you tried natural and organic stores? They have great stuff to make ya feel better there. I am on michelle’s miracle tart cherry concentrate for sleeping, joint health and anti inflammatory health. I also bought stuff for liver and gall bladder health. I got that the day I was hospitalized so it didnt have a chance to work. There are a lot of great things that could help you feel better, or give you short to long term relief depending on your needs.
There are somethings you have to look out for so it doesn’t make your lupus worse.
i know exactly how you feel my whole life has changed and i dont like it. i just take it one day at a time, i am so tired of not having any support from family, friends, or doctors. hold on tight maybe soon things will get better, today i am like you i just want to scream!!!!!go outside and just scream your lungs out!! i am 43 i look 53-my entire appearance has changed, i dont even look like the same person, i use to actually be kinda cute lol but i am serious, my eyes are black and i have brown patches all over my hands, leg, and fingers - i have bruises all over me and dont know where they came from. give me a shout if you need to talk to somebody hugs, kel
June is not as bad. These teaching clinics get booked real quick. The one I go to is not giving appointments now but after November.
auntpearl said:
Morgan, I am also trying to get into a teaching facility to see if I can get some better help. My surgeons have totally kicked me to the curb because they feel they can no longer help me. Finally got a name of a doctor and after I have already been in such pain for 5 weeks...they tell me that they cannot see me until the end of June. I so try to be a positive person but some days I just need to pull the covers over my head. Hang in there.
I will be driving myself tomorrow to the pulmonologist--with a bad P.E. Left the hospital yesterday, but I'd rather be home sick than in hospital. I guess God makes sure that only brave people get this sick. We are a special breed. If it wouldn't have been for Him, I wouldn't have the strength to make it. He is my courage.
Update: I have been put on a pain pump because the pain has become to intense for me to handle. I am not vomiting anymore, thank the lord. The doctor has increased the antibiotics to see if that makes a difference. So far, my white blood count has been decreasing. The kidney specialist that has been treating me during my stay in the has been very sincere and understanding of my needs.
I think the disregard of my primary care doctor really put me in a terrible situation. It does upset me when the doctors have everything they need to properly test a patient, at there disposal yet they lack the intelligence or true concern for a more serious situation in that patient. I am very grateful that I has sense enough to take myself to the hospital, instead of waiting like the primary doctor expected me too.
My kidney issues are a huge concern to me and I should never have to feel like I am less important.
I do want to take the time to say thank you to everyone here for there concerns. I really didn’t have the best support through out my lupus’ life span. I do appreciate the sincerity of everyone here and the great concerns people have for one another. I have been living with disease for almost 19 years, some of it I spent in denial. Other times I had remission and was extremely healthy and had some great life experiences.I feel all of us deserve great lives no matter what stages we are currently battling. I like to share my knowledge and experiences just as much as I like to hear others share there own. I am extremely grateful to Ben’s friends for creating this support community for us to be able to express ourselves and get the understanding and compassion we seek and need.
I do want everyone to be safe on there journeys please. I know everyone is fighting there own lupus battles and just would like everyone to please continue to pray for there lupus family, as will I. I do want you all to know that I will do my best to be kind and understanding of your needs and try to help in what areas I may have knowledge in. I am by no means a doctor or nurse. I have lived with this disease long enough to know, I’ll never stop learning new things when it comes down too it. Researching is the most important thing you can probably do to raise awareness in your community and even in yourself. Thank you so much for reading my babbling lol. Stay sweet and God bless.
Destiny I sure hope things turn around for you now I A
am so Lucky that I have not has the issues that u and so many others are hAving. Prayers and hugs
prThank you for being so kind hearted and really didn’t mean to take over your discussion hun.
The doctor is gonna do an ultrasound and more urine cultures and testing. There is no bacteria in my urine, praise God but my kidneys are killing me. He asked if I have stones in my kidneys now. I said yes, it’s a normal thing for me. Idk what he is thinking though. Maybe they are causing the issues. Prayimg they get to the root of all this. Again, thanks for all the support. If I can help in some way, lemme know. God bless you all.
Hey, made it with the emboli AND several lung infections. God is good. Cancelled one for tomorrow--no more driving for me this week. Rest, like the dr. said.
The Pulmonary Embolism came about as my blood has been getting "thicker" and clots easily. The drs. have even given me a PT/INR monitor to test myself as often as they demand--daily, weekly, or bi-weekly. Three drs. monitor it--the internal medicine, pulmonologist, and hematologist. Still, it's usually off.
Morgan said:
Latina - please be safe, and pull over if you need a few minutes break. PE's can do nasty things. I have scarring left lung 4 spots from the last dance with them. Do they know why you get clots? No clue here. was so relieved when the d dimer test was negative today.
So much more comfortable to rest and get better at home. that is, if you do rest. delegate anything possible to others, and hopefully have home health checking in on you. Big helps when our son was ill long term, kept him out of the hospital 3 hours drive away. They could even do his high powered special IV antibiotics at home, and nurse came in every day to check his IV site, or port once he had one.
best to you, hugs
p.s.
famous quote "God never places more on us than we can handle. Sometimes I wish he didn't trust me so much." (Mother Theresa)
Latina said:
I will be driving myself tomorrow to the pulmonologist--with a bad P.E. Left the hospital yesterday, but I'd rather be home sick than in hospital. I guess God makes sure that only brave people get this sick. We are a special breed. If it wouldn't have been for Him, I wouldn't have the strength to make it. He is my courage.