Beginning Of Recovery

March 16, 2012

I will try and explain where I was almost 5 weeks ago to where I am now and where I hope to be in the weeks to come. I am not sure how much detail to go into. I want to document it, but it’s hard for me to tell and see for myself too. I just don’t want to come across as depressing, but feel the need to tell it like it is. I have gone from literally from dying to seeing miraculous improvement in these last few weeks of getting these medical treatments.

5 weeks ago at the diseases worst, I was not able to move, literally, at all to the point where Kent had to move me for every little thing. When he did move me and help me stand up I would scream in pain, I have never been in so much excruciating pain in my entire life. The pain was 10 times worse at nights. I would happily go through natural child birth again than endure this. (I went natural with Ethan).  Kent and I have never heard such tortured cries come out of me when I was moved or carried. The pain killer did not cut the pain at all. I couldn’t open my mouth to eat, I couldn’t close my hands they were stuck out straight and each finger was crooked and swollen, I couldn’t  touch my face or itch it. Once I was planted in bed I was stuck. It’s like being tied down to a bed and being held down with ropes. And there is nothing you can do about it. It is sort of a claustrophobic feeling. I panicked at times when I got that claustrophobic feeling. I would have to calm myself down and tell myself I was okay.  I was told I was gaunt and pale. My mom said I looked like a holocaust person. My parents began to visit often and were scared. For two months straight at its worst I was so dependent on Kent he slept up in the bonus room with me in a recliner each night so he could be by my side in the hospital bed. When I had fevers and night sweats he was there to help me take the blankets off, because I could not lift a thin blanket or move my hands to do anything to help myself. When I got cold he was there to put the blankets on. When I lay there in pain he was there and gave me ibuprofen.  The poor guy! I am so blessed to have him. He never once complained and he always heard my cries of pain each night. It was probably agony for him listening to me.  I am glad he was the one to hear me and experience my pain and not others. I just couldn’t bear it or want anyone else to see it or hear it. At times in the day it was hard to hide if from people that came to visit.

Week 1 and 2 of IV treatments: When the treatment started I felt like my legs had restless leg syndrome all the time. It made it so I could not sleep at all. I remember lying awake each night just thinking. It was almost like the feeling of waking my system up from the dead. I had insomnia. I think that restless leg feeling was the beginning of all of the medicine working throughout my body to get my limbs moving.  I think it was about after a week and a half of treatment that I took my first steps. I am kicking myself for not documenting that. Kent and I were just too excited and amazed. I was hunched over holding onto my wheel chair. They had me use it as a walker. I could barely walk or move. It was inch by inch, but at least it was something. I had to relearn to move and lift my feet. To relearn to move your muscles you have to think through every little movement. I would try without success and think, oh yeah what muscle was that, how do I tell that part of my brain to tell that muscle to move. It was hard. Each night I would wake up drenched in sweat. I think that was my body’s way of getting rid of toxins. I remember for a full night straight and into the morning I peed about every 2 hours. (Poor Kent had to get up every two hours and had to stay constantly with me.) I lost about 15 pounds in the first week from my body clearing the inflammation.

Week 3 and 4 the improvement is still awesome and considering the broad spectrum of things I am truly happy to be alive.  I still have very bad days sometimes, but the clinic has managed my pain to where the improvement is beginning to out-way the bad days. On the really bad days I have to remind myself it is temporary and to keep going and not get discouraged. They told me it is my body’s way of working through all the toxins and build up and to expect those bad days to come sometimes. They also told me I get sick very easy. And I keep getting sick frequently. Last week I had a temperature of 104.5, so that was a few hard days with pain, but I got through it. I think I got a virus from Kent or from the kids or something.  I just get sick to the extreme; I think because I am still so weak. Fortunately I can touch my face now. It is so exciting on those semi good days when I can put my make-up on. My body may definitely not yet be working quite right, but to actually be able to put some make-up on for me was huge. Just a little normalcy of my old self was wonderful and has meant a ton to me. I can walk straighter, still not normal and perfect, but it is getting better. I can bring my legs up in bed and turn in bed now, which is heaven. I am beginning to actually lift my cup to take a drink, my small motor abilities are still limited, like getting the toothpaste open, opening a door, turning on the sink, washing my hands, washing my hair, getting dressed. I still can’t do all these things without help, but it’s slowly coming back.  The main goal right now is to build all my muscles back. Every muscle has atrophied to where it is disheartening, but I will get there. Once I can accomplish the small motor skills, getting out of a chair, withstand sitting in one position for a long time or standing for a long time, the next step is going to be a HUGE challenge. THE STAIRS.  Going up and down steps is daunting to me like going up a huge mountain. I will work at it and accomplish it though.

I am not sure how much time getting these motor abilities back will be or when I can do steps……. I know I might have a long road ahead of me, but I have hopes with the improvement I have already shown that it might be sooner like a month or two. Who knows.  :)

I feel like I owe so many people for helping us. Thank you for the meals and for helping clean my house and laundry. I can see the relief on Kent’s face when he comes home and isn’t left cleaning all evening and having to cook dinner. I know it has been months and I feel horrible about that.  I am hoping to be more functional soon. Please know I appreciate it so much! Love ya guys!

Em