Thursday, December 18, 2014

Life with Endo

A week ago one of my friends got pinned as a nurse (I hope that is the right terminology). Even though it was about two hours away, it was very important to me that we go and support her. This picture is the result of that trip. The right was taken before heading home and the left the next afternoon after I had started to recover.

Endo bloat or endo belly turns my invisible illness visible, only people who didn't know still wouldn't guess what my body is going through. It hurts to know that the only time I'll see myself with something akin to a baby bump is during a flare.

The keynote speaker at the ceremony was absolutely awful. He spoke of the healing powers of positive thinking. He also spoke of the healing powers of "looking your best" which to him means doing your hair, hails, and makeup, being thin, and possible getting some plastic surgery. Could positive thinking have prevented this? I think not. I did my hair and my nails and wore something nicer than what I normally wear but that didn't help either. In fact wearing dark wash jeans instead of my normal leggings made it worse since the waistband was not as accommodating.

All we did was drive two hours, then sit in a church for a while for the ceremony, then go to dinner and this was the result. I wish you could see how much pain I was in. We had to leave dinner early (before even ordering) because I was in so much pain despite my pain medication. It then took several days of near constant sleep for me to get back to my normal pain levels. Despite all of that I'm still glad we went.

Tuesday, December 9, 2014

New Paracord Bracelet Colors!

I don't think I ever posted about the new bracelet colors I got! When I started out making bracelets I only had colors that represented my own conditions but now I'm branching out. Top to bottom, left to right: green, teal, pink, purple, blue, black, zebra, yellow, brown camo, garnet & gold, and yellow. All the colors are available with an awareness ribbon of any of the other colors. 

paracord bracelet colors

Monday, December 1, 2014

Go Fund Me Update

 Thanks to your generosity I have raised enough money to get my almost $500 worth of blood work! It ended up being 8 vials, and I got pretty light headed but thankfully didn't pass out. As my mother says, phase 1 is now complete! 

Unfortunately unless I can raise the remaining $490 to go to my followup appointment the blood work will be for naught. It is only after we find out the results that I can hope to find treatment. You have all been so generous so far and I hate to ask for more, but maybe I could get a share on FB, twitter, or your own blog? I am still offering a paracord bracelet to anyone who donates $13 or more. If you cannot give that much but would still like a bracelet you can purchase one from my etsy shop for $7.60.

Thank you again everyone who has donated, shared, etc. my previous posts it really means the world to me!

Sunday, November 30, 2014

Soylent: Weeks 3-6

It has now been 6 weeks since I started drinking Soylent, I think. Time is kinda fuzzy for me but I think I did the math right. Week three I lost a whole 0.1 pound, but that was the week after Halloween and I got three bags of candy. Week four is when I first started noticing changes. My eczema has improved, especially on my problem ankle. No matter what I do I can't get it to clear up permanently. I will start a new treatment and it will clear up some but in a few weeks it will be all scaly again. During week four it was similar to what it's like when I start a new treatment. I know from when we were TTC that DHA helps my eczema so I figured that's what was happening. I also noticed a few items of clothing fitting better. That week I lost another 1.2 pounds.

Around the end of week four I was starting to tire of the taste. My knee had also improved so I didn't need it as much; I was able to go back to my normal diet for the most part. Week five I actually gained weight but I'm not sure how much. I didn't write down my before weight as MFP always tells me "you've lost x amount since your last weight in!" I guess I figured it would do that for gains too, only without the exclamation mark maybe haha.

I decided at the beginning of week six to try and change things up a bit. I mixed in 1 tablespoon of creamy peanut butter in my 18 oz of soylent/ensure. This was apparently way too much! I had to keep diluting it with more soylent and ensure because all I could taste was PB and the texture was not appetizing. I do think I will try it again, but maybe start with 1 teaspoon instead. I also messed up my knee again trying to move the TV and plug in an HDMI cable when we don't have an HDMI slot. >.<

My clothes are still fitting better and my eczema is still improved. The weather has been changing over the last three weeks, and normally during this time I break out pretty terribly on my hands. I have special gloves to wear at night that I can't take off in my sleep to keep from scratching my skin off. Other than one teeny spot below my thumb and another at the base of my ring finger my hands are completely fine! I think my ankle is smoother than it has been in recent memory. It still looks bad, but I think it's just scarred and always will.

I think it has to be more than just DHA for this big of a change. There must be something else in Soylent I was deficient in that I'm now getting enough of, and it's kept my eczema at bay. I think if nothing else this would a reason to continue drinking it. I have recommend my little sister who has worse eczema than me try it for a few weeks and see if it helps her too. I don't know if she will though.

I lost another 3.6 pounds this week (week 6), bringing it up to a total of 8.4 pounds (which is 4% of my starting weight). So even with Thanksgiving I lost all I gained last week plus some. I didn't get this to lose weight but it's certainly nice. I have to think my metabolism is happy that I am eating (or drinking) food more often throughout the day rather than forgetting to eat for hours and hours. Plus the lower carb count certainly helps! I know this can't keep going forever though, especially since I can't exercise. I am already mentally preparing to plateau.

Thursday, November 27, 2014

Happy Thanksgiving!

Being a Thursday, I've got to rep my endosisters by wearing my yellow birthday outfit complete with yellow jeans. Thursdays are awareness day where you wear yellow and use the hashtags #onthursdayswewearyellow and/or #otwwy. Usually I can't participate because I stay in my PJs and don't have any yellow ones! :D

This year I am thankful for my mom, little sister, and husband who remain as supportive and helpful as possible. I really couldn't do it without them.

I'm thankful for the support I've found in a spoonie facebook group as well as the spoonie and body positive communities on instagram. It's nice to have people who "get" you.

I'm thankful for those who participate in the Daily Deal thread on the Sims 3 forums. Because of their help I now own a much, much larger portion of the store that I would with my nonexistent budget. They have taught me the tricks for minimizing costs and maximizing sim points. They are also incredibly nice and supportive for an internet forum. It feels like they really care about each other. They will even gift people store content who are having a bad day, or it's your birthday, or just randomly. In fact yesterday I was gifted a $24 world!

But most of all, I am thankful for those who have donated to my gofundme campaign. I can't express how thankful I am. Because of these donations I now have enough to get my blood work done, which I plan to do next week. I posted before about how hopeless I felt but now I have a little hope. As you can see, I am now over halfway to my goal! I can do the blood work now and the rest (if we get it) will be so I can go to a followup appointment and find out the results of said blood work. I don't have the words to say how thankful I am.

Saturday, November 15, 2014

Oh my god you guys!

After posting my rant the other day it seems two of you have donated $50 each! Thank you sooo much! I would thank you personally, but you were both anonymous so I can't. It really did help lift my spirits a bit knowing that a) anyone even reads this still and b) care enough that they would donate that much. I have a little bit of faith that maybe, just maybe, I'll at least be able to raise the $477 needed for my bloodwork if not anything else. I'll still have to cancel my December 1st follow up appointment but maybe I can hope for one after the new year. I have to believe it's possible because I don't know what I will do if I don't. =/