Day 43 of hell

Hello-

I realize that it has been 3 weeks since I last posted and I feel really bad that I have not been able to update and have worried so many people. I am really sick. Really, really, really sick. I have been through A LOT in my life and I have never been as sick as I am now. This is day 43 of being in the hospital or bed ridden.  What I have experienced I can only describe as pure hell and I honestly cannot believe that I have survived a lot of those moments.  43 days in bed, 6 911 calls, 38 needle pokes, 27 different medications and a ton of days spent in the ER.  I am now at home on oxygen, with a heart monitor and need a wheel chair just to get me into the hospital/appointments.

Yesterday we went to the hospital for more blood work and to see one of my specialists and I was too sick to sit in the wheelchair.  The afternoon was better and I was able to at least write. I never thought that I would be too sick to get online...not have enough energy to read emails or be in too much pain to text message. (Note, I have not checked any emails pertaining to blogging in 4 weeks and it will be awhile before I do so).  Now it's taken me 3 days to write this post.

I am in severe pain and my hands are numb. I'm legally blind in my left eye from all of this and hoping it's not permanent.  My body is burning and when I was in the sunlight from the house to the car/car to ER I was screaming because it felt like I was on fire. Kinda like a vampire but without all the cool sparkling...just pure hell.  Misery.  My body has been through more than anyone I have ever met before all this happened and the past 43 days have been the hardest of my entire life. Everything from neurological problems, to relentless nausea vomiting, headaches, numbness, tingling, burning, nerve pain, low temperatures, fevers, chills, blurred vision, pain...lots and lots of pain.  I have orthostatic intolerance...so even just getting to a sitting position my heart rate soars.  If I am upright for a longer period of time like going to the hospital I start to get very lightheaded, nauseated, sweating, my pulses are weak, heart is racing and I am about to pass out. I am working on building strength, but even lifting my legs in bed is a challenge. 

I can't even begin to explain the emotional toll being in bed takes on your mind.  Most of you know I was on bedrest most of my pregnancy...but it sure is different now being a mom and not being able to do anything. I feel helpless.  Hopeful.  Jealous. Very jealous of everyone who is able to go about their business. I have never been one to take life for granted, but now even more I realize how much we all really do take for granted. Just waking to the fridge, being healthy enough to pick your child up to change his diaper, being able to walk outside, drive a car, function...





The doctors still do not know what is causing all of this, but we are waiting on more test results.  If I don't make more progress/and or we get a diagnosis we will be going to the Mayo Clinic.  I am completely out of commission and  I want my life back.

It's heartbreaking to hear my son cry in his room and not be able to get him.  Have him beg for me to get out of bed to play, and have to tell him that I cannot.  I can't explain how hard it has been on me not being able to care for him at all...I can't even take care of myself.  We have had to hire help to take care of me and Johnny and have had family put their lives on hold to help us out.  I have always been a tough cookie and have pushed through anything and everything that has come my way in life...and I am doing the same now. I am getting breaks mainly in the afternoon when I feel crappy instead of awful, and I am thankful for those times.  I had about 1 1/2 weeks that were the worst of my entire life.  Think back to a time when you were really sick and you thought, "oh, I am SO sick, I just want to die...this is awful."  I usually don't get there.  I always tell myself...it could be worse and it will get better. However, there have been so many times were I just didn't think I could possibly survive through the night. 

I don't even know what to really say right now...but that I am here and I am sorry for not writing.  It takes so much energy to get online and many days I was too sick to even watch TV.  These days are better, but I am still going through a hell that I cannot believe. 

Tuesday is our anniversary and I cannot put into words how much I love my husband and how proud I am of him keeping our family together.  Not only is he exhausted, overworked, stressed but we got some really upsetting news on Saturday as well that is turning our lives upside down even more.  We just will take this all one day at a time and hope for the best.

Some of these days I just slept 17-18 hours a day. Now, I am up for about 2 hours before the debilitating exhaustion sinks in...but I am finding it harder and harder to sleep.  I am a wreck and it is taking everything in me to keep it together.  Being able to see Johnny even if it's only 15 minutes on a particular day keeps me going.  All the love and support from everyone has helped immensely...we have gotten so much support it's just incredible. 

It's just frustrating.  You think you go to the hospital and they fix you.  They are trained to fix you, but they haven't been able to fix me. I keep hoping that one doctor in these dozens that I have met will be my Dr. House...but I'm just passed on to the next doctor. At this point, I don't care what it is I just want someone to care enough to figure out WHAT is going on.