Reply To: throat collapsing, veins hurt!

June 25, 2012 at 2:40 am

thank yall all so much for your kind words, i can’t tell yall how much it all means to me!!! Well, rest didn’t come easy this weekend.. we are now trying to get the house on the market within 2 weeks (while working full time crazy job, two little kids and Ivig, friend having a baby and a wedding ahhh).. I know I need to find time somehow to rest more! My Mom is selling her house in another state and will be moving closer once that happens, which will hoepfully just be nice to have someone else around! Most of my friends all have little ones and big families around, it’s hard since they just can’t even begin to understand and they are all involved in their own lives.. its impossible for someone to really understand all of this without knowing someone or going through it themselves i think.. but I understand that
I am better (not as freaked out the past 2 days).. spending time with my family and not working AS much really has helped.. it is REALLY REALLY odd- It’s like i have so many symptoms of myasthenia with my eyes drooping etc.. it was 100 degrees out today, i was out for about thirty minutes and felt like I couldn’t open my eye.. sure enough its like my face melted and my eye was halfway shut!! my husband noticed too.. i went inside in the AC and it went back to my now normal eyelid!!??!
But, then I have the numbness side of it.. i stood up for a long time last night and my foot has been completely numb for 24 hours now. i’m not sure if it’s a coniencidental nerve compressed by my shoes, or what?! My throat thing is a lot better.. (again a MG like symptom, when my hormones are a certain way my symptoms have a major flare)!! SOO wierd!
Dawn – yea, they actually said I could have an extra IVIG dose this coming week.. so I was planning on doing that.. however my work schedule I can’t change (which is a serious case of frustration for me right now).. and so I can’t do it this week.. If I did I would really run myself into the ground not having a second to recover from it… I am afraid I am about to be forced to make the time .. however if I can get the house on the market first, at least the financial stress will be a lot less (I never ever imagined we would have such a hit from my income.. we have always planned well, but couldn’t have predicted this.. i was a wreck last week when we made the decision to downsize out of this house.. but now I know it will help in so many ways- stresswise and into a 1 story smaller house to keep up with)… my biggest emotional hit was just that selling the house seemed like a admittance that this “thing” is slowly winning, i dno’t want to show any signs of “defeat” but i know it’s best just to plan for the worst, and hope for the best!! I will call my pcp and ask for a swallow study and then an ENT referral too (SOOO SICK of seeing dr’s!!!)
Dawn – I may check into that sub Q thing.. interesting that she got the rash like me to! They say the skin biopsy “sealed the deal” with my cidp diagnosis.. but I am just weary.. we are talking about going to mayo.. just trying to slowly make an ideal situation for this situation! :0!! Thank yall so much for yalls support!