Doctor day is finally here. I go to my PCP in the afternoon..I'm nervous. Not sure what to expect or what he will say or do, but we have a good relationship, I trust him and, his wife has Lupus.
I went shopping with my son and after an hour pushing the grocery cart I felt like I wanted to collapse! I told him we had to cut it short, my hips were in agony and walking and standing torture.
Then while holding the cart both my hands fingertips started tingling like they were falling asleep and quite painful too. I felt a little panic come over me because this is something new.
Yes, I have to grab a buggy every time I go out. I usually have to take a sit down break while in the store, too. Take it slowly and only do what you are up to doing at the time.
Prayers for answers and strength as you face this new chapter in your life.
Get your questions ready for you dr. I like the fact that his wife has lupis. I bet he has done research on lupis which could be very good for you. Don't be nervous. I always say "it is what it is". I don't experience what you did, but I can't walk around in any store for more than 20 minutes, but I just get fatigued.
There are some very useful forms at the top of this page that can be very helpful when seeing your doctor. I have used many as my memory is less than...forgot what I was going to say. ;)
Anyway, with limited time with a doctor, having your questions ready will be a great tool for you. If you even print out the forms and can use them as a guide and use them again for your next visit.
Well after the doc visit I sat in my car and cried, I continued to see patients, I drove in severe pain from my bottom, pain in both legs horrific...even depressing the gas was agony solo...Sat and cried some more. There are about 9 additional labs ( including a sed rate) he needs to run. I've never even heard of these tests but he said I need them and, to see a rheumatologist doc ASAP.
Most likely not lupus he said because I'm "atrpical speckled" on the ANA pattern and my ANA tiger is high at 1:1280. It's gibberish to me. He said it could be Scleraderma, Sjour....'s whatchamacall it or connective tissue disease/disorder. You'd think as a nurse I could spell this stuff!
I'm lost all I know is that I hurt allllll the time.
Thanks for all the feedback, looked up Raynauds, that sounds about right with the singles. But the high numbers just made me cry, made me feel so sad, made it all so very real. For so many year I've been mystery girl disease, good ole psycho hypochondriac and now I'm high with dots all over, speckled. :(
I know I'll be ok, alright, but for the now....I just feel so invaded.
On a happier note, sorta, were thinking of pushing the nuptials up so I'll have insurance, this will most certainly make me broke. So let's plan a wedding. I'd love to get some inexpensive, creative, romantic input outside of the jp thing.
So sorry to hear you didn't get good news. You;ll be OK . The wedding doesn;'t have to be lavish. It's the marriage that' s important , not the wedding. One day at a time. I know only of 1 person with scleraderma and she's had it for over 20 years. Take care. Thinking of you and hoping you get some rest.
Time to plan a wedding!!!! Take each day as it comes and try not to worry too much about the future....go through the testing and see what the results are. I KNOW it is hard...I've been there! The worst thing for your body is stress and I hope you are able to plan a wedding that you will be overjoyed with....the main focus is that you will be getting married!
You will need lots of rest and time to take care of YOU!
I am sorry that you didn't get the results that you wished for, however the flip side is that the more they know the better it can be treated. That is the good news that you can take away from your visit. Also, finally seeing a Rheumy will, hopefully, leave you feeling more educated about the disease as well as feeling proactive in your course of treatment.
Sounds as if there is more good than bad happening, but as Loriken214 says, try to remain as unstressed (easier said than done) about the wedding. I am certain no matter the manner you choose to get married, it will be the happiest of days.
congratulations again to the both of you,
DeAnne
wubbabear said:
Well after the doc visit I sat in my car and cried, I continued to see patients, I drove in severe pain from my bottom, pain in both legs horrific...even depressing the gas was agony solo...Sat and cried some more. There are about 9 additional labs ( including a sed rate) he needs to run. I've never even heard of these tests but he said I need them and, to see a rheumatologist doc ASAP. Most likely not lupus he said because I'm "atrpical speckled" on the ANA pattern and my ANA tiger is high at 1:1280. It's gibberish to me. He said it could be Scleraderma, Sjour....'s whatchamacall it or connective tissue disease/disorder. You'd think as a nurse I could spell this stuff! I'm lost all I know is that I hurt allllll the time.
Thanks for all the feedback, looked up Raynauds, that sounds about right with the singles. But the high numbers just made me cry, made me feel so sad, made it all so very real. For so many year I've been mystery girl disease, good ole psycho hypochondriac and now I'm high with dots all over, speckled. :(
I know I'll be ok, alright, but for the now....I just feel so invaded.
On a happier note, sorta, were thinking of pushing the nuptials up so I'll have insurance, this will most certainly make me broke. So let's plan a wedding. I'd love to get some inexpensive, creative, romantic input outside of the jp thing.