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nicolehinkel
08-01-2011, 08:16 AM
I just came back from the doctor and after being told last year I didn't have lupus even though the gene runs in my family and my family doctor blamed all my symptoms past and present at that time on a recent tick bite contracting lyme, he tells me I have lupus, and need to see a rheumatologist. Just saturday he said my ANA levels were high but not what they were, today I asked for a copy and it showed 1:320. I was floored. I have had so many issues and have had numerous surgeries, a miscarriage a very high risk pregnancy with my son being born with thrombocytepenia (sp) and was full term and weighed 3 lbs 15 ounces and now at almost 6 weights about 67 lbs and who develops rashes that look like heat rashes and needs medication for.

lovedbyHim
08-01-2011, 11:12 AM
I just came back from the doctor and after being told last year I didn't have lupus even though the gene runs in my family and my family doctor blamed all my symptoms past and present at that time on a recent tick bite contracting lyme, he tells me I have lupus, and need to see a rheumatologist. Just saturday he said my ANA levels were high but not what they were, today I asked for a copy and it showed 1:320. I was floored. I have had so many issues and have had numerous surgeries, a miscarriage a very high risk pregnancy with my son being born with thrombocytepenia (sp) and was full term and weighed 3 lbs 15 ounces and now at almost 6 weights about 67 lbs and who develops rashes that look like heat rashes and needs medication for.

Hi Nicole, welcome to our family. I'm sorry you have been through so much with your babies and now being diagnosed with lupus. Hearing those words can be overwhelming. I cried hard the day I was diagnosed. At the same time, I had a sense of relief that finally they could put a name to the insanity that was happening to my body. Once diagnosed, then it could be treated. I felt so much better. I still have rough days but I no longer live for my bed(smile). If you have any questions, you can post it and someone will be glad to be there for you.

nicolehinkel
08-01-2011, 11:44 AM
Right now I have been having some majorly bad days because of the great deal of stress I am going through. This is a relief because I finally know it isn't in my head but until it gets under the control I am going crazy.

tgal
08-01-2011, 01:02 PM
Hi Nicole. First let me welcome you to WHL. I understand how difficult this must be on you. The good news is now that they understand what is going on they can give you the right meds and you can start begin to feel better.I know you are feeling scared and unsure of what to do but that will pass as you adjust. It is going to be OK and, until then, just know that we are here for you,

Take a look around. There are many threads that have so much useful information. If you have specific questions then feel free to start a new thread yourself. I look forward getting to know you and, once again, welcome to the WHL family. We really are glad to have you

lovedbyHim
08-01-2011, 03:03 PM
Right now I have been having some majorly bad days because of the great deal of stress I am going through. This is a relief because I finally know it isn't in my head but until it gets under the control I am going crazy.

Nicole, do you have a supportive family to encourage you dear? I have supportive adult kids and a boyfriend who validate my crappy days as best they can. The WHL family really understand it better because they are on the same journey. Some days are rough and then someone will say something on WHL & crack me up until tears fall from my eyes. Suffering brings about some real genuine twisted humor if you don't let it turn to bitterness. It sounds like you have endured a lot with your babies and soon you will be treated and hope will return. Hang in there a little longer. If you need a laugh, read the thread called, "you know you have brain fog when..." laughter can carry us through some very hard times.

nicolehinkel
08-01-2011, 03:35 PM
Grizzly Bear,
My husband is trying but he doesn't do well with medical issues and my family isn't that close and my kids only time will tell, my daughter who is 14 was great today because I picked a few things up from the store but I just couldn't bring them into my mom's and she did for me, even when I was trying she told me to put them down. I don't see the specialist until the 29th and I am currently on steriods because of a sinus infection but the only thing my family doc will give me is vimovo, which doesn't do much. I have started missing time from work, because the last flair up, they blamed on my lyme disease and I kinda made my own schedule then but now it's hard. I can't afford to not work full time monetarily but I also can't physically do it at this moment.

nicolehinkel
08-01-2011, 03:36 PM
Tgal,
Thank you. I had to join a forum because I am just lost. My husband is a drummer and gets so much out of the drummer's forum he belongs to and I never understood it but even though I just joined here today, it eases my mind that I can just come on here and say what good or bad day I am having and it's ok. That really helps.

gkf109
08-01-2011, 03:47 PM
Hi Nicole, I am fairly new to this site too but I can tell you this is a great site with alot of great people! Welcome

tgal
08-01-2011, 03:49 PM
Tgal,
Thank you. I had to join a forum because I am just lost. My husband is a drummer and gets so much out of the drummer's forum he belongs to and I never understood it but even though I just joined here today, it eases my mind that I can just come on here and say what good or bad day I am having and it's ok. That really helps.

That is exactly what we are here for. No matter how much healthy people love us or help us they can never really understand what we go through. Coming here allows us to find people that "get it" which is a great relief and weight off of our shoulders

Glad to have you

steve.b
08-01-2011, 09:37 PM
hi nicole,
welcome.
i call this my cyber family.
i get so much support from my friends here.
hope you can too.

lovedbyHim
08-01-2011, 11:16 PM
Nicole, how many children do you have and what are their ages? Mine are all grown and out of the home. I raised four. I now have three grandchildren with one more on the way. They are deep into my heart.

kim,l
08-02-2011, 05:34 AM
hi nicole welcome to the whl family we have a great bunch of people here look forward to getting to know you

Elo
08-02-2011, 08:40 AM
Hi Nicole (: Welcome to WHL - I'm sorry to hear about your little boy :( It's so very sad when children are sick.
I'm glad you've found us, and i truly hope that the forums give you some comfort. Best of luck to you.

nicolehinkel
08-02-2011, 08:46 AM
I have 3 and a step son. My 19 year old step son lives with us, which is a big head ache. My oldest son whom will be 17 tomorrow and my 14 year old daughter live with my mom, because my health has been an issue my whole life and my almost 6 year old son moves out of my moms on Sunday and into his dads after the custody issue we were having with my mom.

lovedbyHim
08-02-2011, 01:14 PM
I have 3 and a step son. My 19 year old step son lives with us, which is a big head ache. My oldest son whom will be 17 tomorrow and my 14 year old daughter live with my mom, because my health has been an issue my whole life and my almost 6 year old son moves out of my moms on Sunday and into his dads after the custody issue we were having with my mom.


Ok three teenagers is enough to make anyone crack up. I had three at one time and it was nuts!!!. I'm sorry about all your stress. Please try to take time for yourself as best you can.