Today I have a day free of doctor appointments and other things so I thought perfect time to sit down and actually blog.
I am sorry I struggle to get the energy to write, often. I have been ok…OK. Not great, not dead. I think the Lord everyday I wake up and am still on this earth. My to-do list is nowhere near finished and I need as many good days as possible to make my impact on this world.
Since I last blogged I have been pretty steady health wise. I am exhausted and paralyzed with extreme fatigue daily. I go to bed at 7pm because my body will not let me sit up any more, it’s a weird feeling, but if I sit up any longer than that I get nauseated and I get a horrid headache. I go lay in bed and usually watch TV until I fall asleep. Joshua is a Godsend and helps me do everything. If he has to work in the evening he makes sure I am bathed and safe in bed before leaving. I am so BLESSED to have him. I don’t know what I would do without him.
I have mental breakdowns every once and awhile. It gets tough. Being this sick this long takes a toll on you emotionally. It is almost as if right now the “Old Elle” has died and I need to mourn that loss. The “Old Elle” could travel, eat out, stay up later, dance, socialize, and the “New Elle” is pretty sedentary, solitary and LAME. I am accepting that and daily I try to focus on the things I can do and push my body to keep being able to do those things.
The hardest part for me is the food aspect. Two years ago I could eat anything I wanted, well minus dairy and some fresh produce. Then it all changed and now I have to be so careful what I eat and when I eat it. It’s hard and it’s isolating. I cannot go out to eat or go hang out and have drinks, I drink the same bottled water everyday and monitor every ingredient that enters my mouth. I have “SAFE” foods that are usually ok, but some days, they’re not. Dr. Afrin says that is normal.
My body is different everyday. Its really mind blowing. One day I can have major swelling and pain in one area and then I wake up and its gone. I couldn’t move my left wrist for weeks and then I woke up one day and it was fine. Two months later (yesterday) I noticed mid day that it hurts like a crazy again. Odd.
The swelling is the craziest to me. I wake up every morning with a swollen face. I think it has to do with my hair, but I am not sure. I need to try sleeping in a bonnet and maybe that will help. My pillow and everything are in hypoallergenic thingies and are newish, so who knows.
Right now my legs are swollen and purple. My only guess is that I was upright too much on them yesterday. I made cupcakes! Super fun, I miss doing little things like that. The “Old Elle” loved cooking and baking…its too dangerous and exhausting for the “New Elle.”
About a month and a half ago the left side of my chin went numb. I still can’t feel it, which has been actually nice since I have giant ulcers on my lower face right now. I cant feel the pain on that side J I had several MRIs…. long story, and nothing has changed in my brain or spinal cord to be causing the numbness so we just blame the mast cells and wait for it to resolve. ANNOYING. At least I am not drooling or anything…LOL
I got a membership at Lifetime Gym and have gone swimming twice. I hadn’t been in the pool since the ischemic colitis/c-diff happened, a long time! It feels so good to be in the pool, like I have a normal body, almost like I am “Old Elle.” As soon as I start to step out of the pool though its like a drain unplugs and all my blood goes though my feet and I am back to “New Elle.” BOO. I hope to go at least twice a week and tone up some of this body.
I have gained most of my weight back that I lost with the ischemic colitis. I had lost 40lbs but now I’ve gained about 25 of it back. The problem is that it isn’t muscle. IT is all fat. I am literally bones and fat. I need to build muscle back again, I had worked so hard doing the “Levine protocol” for POTS, which had me recumbent biking everyday 90 minutes and I was able to do that with no muscle fatigue. Now I can barely walk to the mailbox without feeling the muscles tire out. It’s pathetic really.
Although my vocal cords are still paralyzed I have worked on the muscles around them and so I have a pretty strong voice again. It is definitely not back to normal and if I talk too much I lose my voice completely but at least if I need to I can scream. I have to chew my food extra careful and sometimes I cant breathe correctly because of the vocal cord dysfunction but I am working hard with my speech therapist to make life as normal as possible in regards to speaking, eating, and drinking. Well, the actual act of doing those things. LOL.
I began a treatment at the U of M for my mast cells in which I go to the infusion center every 4 weeks and get medicine. What sucks about it is that it takes 2 hours and is risky. I wont know if it helps for at least 6 months but I will tell you I am having some side effects. I am even more tired. The doctor said that only 3% of patients said fatigue was a side effect during the trials, but I can tell you it has made me extra tired. I hope it works, we are holding off starting any other new medications or treatment ideas until we know if this works at all or not. So, for 6 months my meds and everything else will stay the same. I am really praying this works like a charm because I am near the end of my rope.
It’s so hard to stay positive and smiling everyday. I try hard. Each morning I wake up I pray and thank the Lord for giving me another day on this earth, but I also ask and beg that the day will be easier than the last. As I fall asleep each night I pray, I speak to God for a long time and ask him to ease pain in this world and I reflect on my day and how I could have served the Lord better. I need energy to do the things I feel like I was put on earth for.
I feel my calling is to teach people about life, choices and promote understanding of everything in this world. I want to show people that not all sick people LOOK sick. I want to spread the ideology that everyone no matter how they appear, act or seem, are struggling with something and that its up to each of us to figure out how to best respond to that struggle. There are many different struggles in this world; my illness is no more of a battle than someone else who is dealing with abuse, addiction or poverty. It’s all about OUR choices.
I just don’t have the energy. I want to be vibrant, beautiful, fun…but that’s “Old Elle” Elle.” “New Elle” is pretty calm, relaxed and lame. Someday “Old Elle” will be back, and that’s what we hold on to in this house. That’s our hope. We must believe in our hearts that “Old Elle” can come back somehow while making the most out of “New Elle.” Its. SO. HARD!
Like I said before, Joshua is my hero. He catches me when I fall, shoots me with the epi pen when I cant breathe and helps me mentally walk through this battle. We are a good team…LOVE. FAITH. HOPE. That’s what’s happening in this house.