Monday, November 14, 2011

Healing birthday and other stuff...

I have been in some of the most intense pain of my life for the past week and it has not been pretty. I've also been flaring pretty bad with my colitis still and it has basically just been me laying in bed or the couch or the floor or wherever I am really, hurting extremely bad, and trying to get up to go to the bathroom and my leg muscles not working all the way and almost falling over and then almost passing out. Over and over again for over a week now. I don't know if my potassium is crashed again or if my muscles are just being annoying or if my back is messed up because the pain is mostly in my lower back and shooting down my right leg, but whatever it is is freaking annoying. I have also been getting very close to passing out if I stand up for longer than 10 minutes and especially if it is over 30.

Good thing is I am going to see a general practitioner tomorrow and I am going to have them check my electrolytes and my hemoglobin levels and talk to them about my muscles. My old doctor and several of my other specialists have thought that I had fibromyalgia, but it has always been one of those you already have this diagnosis and that diagnosis and do you really need another diagnosis? However, I can't get the medication for it without the diagnosis and I am tired of hurting. The chiropractor helps a lot, but with no income I can't afford to go every week like I used to so the off weeks are extremely painful. I am becoming more homebound by the day and the whole point of being here is that I am supposed to be getting better...and I just feel like I am getting worse. Something has got to give. One of the reasons I haven't been blogging is because my fingers hurt severely from the typing. So far today has been a good day though so I am going to try and get up and run some errands before I'm in bed for the rest of the day and hope that tomorrow the doctor will give me some more answers. I am also still waiting to hear back from the GI doctor I want to see for an appointment time to see if we can get this colitis a little bit more under control.

I am actually not in pain at all from the colitis which is very odd for me. Plus I am eating like a champ still and last time I checked I am up to 116.6 pounds. When I got released from the hospital I was 101 pounds so I'm definitely headed in the right direction. I am also not really going to the bathroom as much as I used to but it still could get better...maybe...maybe I am just going to be like this forever because that is what colitis does. But I really think my electrolytes, hemoglobin, and energy would be better if I didn't go to the bathroom as much because I am losing so much of what I'm putting in. I think. I don't really know.

Anyways. I have done some stuff the past week on days I felt ok for at least a little bit. I helped my mom out at work on Thursday so that she could have part of Friday off for veteran's day since she can't be off unless all of her work is done. I also ate lunch with her church women's group on Wednesday which was interesting. I had salad because the main course was made with cream of mushroom soup that wasn't gluten free...but it was good salad. Friday was veteran's day so the kiddos are out of school. My aunt is a professional photographer and takes the newborn pics for the hospital that is right next to our house (thank God in case there is an emergency with me). She still had to take pics because obviously newborns don't wait for holidays so she brought her kids, my cousins, over and we hung out while she was at the hospital taking pictures. Then we all went to go see Puss and Boots at the movie theater. We wanted to go see the 3-D one, but they couldn't get the projector to turn on so after we waited almost an hour we went to the 2-D one instead and got a refund for the 3-D portion of our tickets. It was fun to get to spend time with them though. They are all so busy, eventhough we are close we still don't get to spend a lot of time together and I love them so much :) The movie was better than I thought it would be and it was a good time. Then I was completely exhausted so I spent the rest of the day and night asleep.

Saturday was pretty low maintenance. We needed to plan menus and I can't find my menu planning papers anywhere (it's a magnet that has all the days laid out with space to write the meals for each day and your shopping list and I think it disappeared in the move). So I found this cool new website that is called foodonthetable.com It is so much fun and one of my new obsessions. You go on there type in your zip code and it brings up the stores near you. You pick the stores you shop at and it imports the sales into their database. Then you tell it what you feel like eating that week (chicken, pork, beef, etc and it has several choices for each, what kind of veggies you like, etc) and if you have any special diets (me being gluten free and allison-my sis- being semi vegetarian were clicked. Then it combines all that information, once you rate it in order of importance, and gives you recipes. You click on the recipes you want for that week and get enough for all your meals. Then when you are done you hit print and it prints out the recipes and your grocery list with the sales and everything. How awesome is that. Of course we needed to add snacks and stuff to the list, but within less than like 30 minutes we had menu for the whole week and a grocery list to go with it. Then all I had to do is cross reference with coupons and we were on our way. How cool is that? I almost passed out at the grocery store several times, but we did find gluten free oreos there so life was ok still. This week we will be having: "poverty meal"-which sounds like goulash, chicken with tomatoes and mushrooms, ground turkey shepherds pie, shredded french dip, spaghetti bake, and spaghetti squash chicken alfredo. Sounds great, right? I know I'm excited. I've really gotten into this cooking, cleaning, grocery shopping, thing. The foodonthetable.com thing costs 15 dollars for the first 3 months (only 5 dollars a month for this month) but we think we can get enough recipes and menus in the first 3 months for us to not have to renew it for 10 dollars a month after that. So we are trying it and so far it has already paid for itself with the new recipes and ease of the shopping this week. My mom likes it because she doesn't do the whole menu planning thing. If it were up to her she would literally eat soup every meal of the day, but I like real meals. She likes it because if I don't feel good and can't cook (which was pretty much every day last week) she has the menu at hand and recipe printed out and just has to make what is on the menu and we know we have the stuff because the grocery list was created automatically from the recipes.

Yesterday I tried a new church and I LOVED it. It is called Maryland Community Church and it is non denominational. But I absolutely loved it. It is a bigger church and has definitely more contemporary music than was at FBC Salisbury but it reminded me a lot of St. Andrew's (my old church) on steroids. They start out with praise and worship music, then the message is brought (which was around 45 minutes yesterday but felt like no time at all) and then there is more praise and worship time where you can sit, stand, sing, not sing, pray at the alter, take communion whatever you feel the spirit is leading you to do. They also have a coffee/snack shop, and bookstore with new books that are relevant to classes they are offering. This Friday night the Chix group (women's ministry) is having a holiday craft night that I've already been invited too and they have so many small groups that sound like a lot of fun. The developmental disability home also brings their clients to worship there every Sunday so I feel like that may be something that I would love to get involved with and help with as well. One of my least favorite things about the church is that the communion is something I am not sure I can follow or allow myself to partake in without talking to a preacher because they just set up serve yourself stations throughout the sanctuary during the second praise and worship block and you just walk up and take it if you want it and don't if you don't. But I'm going to ask about it. One of my favorite things that I like about the church is that they do this thing called life journaling. It is a way for the whole church to read the entire Bible every year together. There is a different reading posted on their website every day and you read the readings (3 or 4 chapters a day from various parts of the Bible) and journal about a part of it that stands out to you. Then when you get together in your small groups that week or month or however often they meet you can talk about what stood out to you together. What a way to hold the entire church accountable for being daily in God's word. If you want to do it I will post the link to the church here: http://www.mccth.org/ and you can just click on the today's life journal reading plan link and do it yourself. It gives you suggestions of how to journal using the SOAP method (which doctors and therapists use all the time--but this one is a little different) It says that you follow SOAP or scripture, observation, application, and prayer. You pick out one of the scriputures and write it down, write down what you think God is saying you in the scripture and how you will apply it to your life and then a short say a short prayer and write what you think God is responding to you. That part can be done later obviously. I just thought this is such a cool idea and a great way to make sure everyone in your church is on the same page. Love it. I think I will really like this church a lot...even though it is very different than a conservative southern baptist church.

Also, yesterday was my 2 year healing birthday. I was diagnosed with celiac and ulcerative colitis on November 13th, 2009. That means for 2 years and one day now I have known that I have these diseases and have been trying to tackle them head on. I feel like if I gave up when I found out I would have already had my colon removed and been more miserable than I am now. But I am a fighter and we will figure this out and it may be that eventually my colon does get removed. But right now I'm fighting, researching, medicating, listening to my body, and advocating for myself. Right now I am celebrating 2 years of knowing that I have 2 diseases that are controllable and manageable as long as you do it right. And 2 years of knowing that I am not as crazy as I thought because I actually do have diseases that are diagnosable. I was sick for almost 6 years before we found out what it was and everyone (doctors, friends, professors, etc) were beginning to think it was all in my head including me. But 2 years and 1 day ago I found out, and I started the healing process, and it has been beautiful and will continue to be beautiful.

So anyways that is about it, and I have a lot I want to get accomplished today and I'm already getting weakish. I need to go to walmart, take the recycling to goodwill and look for some jeans because I don't have but one pair that fits and it will be cold soon, call the doctors and change some appointments around, and work on coupons for the coming up week. Wednesday I am going to Indiana State University to meet with the chair of the dietitian department so if you could start praying about that now, that would be super great. I really want to get in there. Thanks. Okay that is all for now...gotta go be productive. Love you all and miss you all and I will be back in Salisbury in 15 days for those of reading from there!!! :) Can't wait :)

Peace

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