I’ve been having a moment. Well, a very long moment that started in January and has been building ever since. This isn’t book related so if you care to skip it, feel free.
Last Friday I did not have a good appointment with my Rheumatologist. My iron levels are leading me to a transfusion and my Vitamin D levels are so low that “heart event” was mentioned as was “stroke”. To make matters worse, my BP was 182 and it continued to go up as my phone kept going off from work. It was unreal. It has never been that high and the nurse took it numerous times.
My. Health. Sucks.
I take iron. I take Vitamin D. I make good food choices about 75% of the time. I am just not absorbing nutrients and this is not something I can even control so it made me angry. I suspect that Celiac as well as Lupus have done their damage and now I am just a sieve for nutrients to pass through. Plus the shape of my red blood cells are wonky too.
After three solid days of wallowing in my misery and being angry as heck, I started to feel very small for focusing on all the negatives but sometimes you gotta get it out of your system. I haven’t quite gotten it all out yet but I am close.
This week I am making small changes to fix the 25% of my diet and habits that are not so great.
- I haven’t had coffee in nearly a week but I don’t plan to give it up, I just can’t drink it right now with my BP so high.
- I’ve cut my portions in half and added more fish to my diet. The family is already complaining about that because I managed to stink up the house cooking up my lunches.
- I’m not exercising yet because with the low iron levels my energy levels can barely get me through the day right now but that is coming.
- Trying to sleep more. Trying.
- Removing sync on my work email account as soon as I leave the building.
- Trying to get up every hour to walk around. I was sitting for very long periods of time… maybe three hours of intense focus before getting up. Not good.
Anyway, that’s where I’m at right now. By December, when I find out who my new doctor is, I am hoping to be down 20 lbs. Sounds like a lot but I’ve lost three since Friday so really only 17 more!
So that’s it. I got mad, pouted, cried a little, threw myself on top of my bed and groaned like Harry Burns did in the Casablanca scene of When Harry Met Sally. Whatever I can fix, I will and if I can’t I won’t.
I’m over it now.
Book Chatter 
**HUGS** I know what those mad moments feel like. You’re doing everything you can do, and that’s really really huge. Big kudos for the self care! It’s very inspiring – you’ve reminded me I need to do the same.
Thank you! I feel so much better just getting that off my chest.
You work so hard to stay healthy…you just have to keep on going…one step at a time…
I feel as if I do work hard but obviously not hard enough. I just have a hard time finding the energy these days.
{hugs} and CHEERS! I wish I could help more with strategizing, etc. but do know I am cheering for you and will support with positive words of encouragement and an ear to listen when venting is needed. 🙂
Thank you! I was down another pound today so that helps. I know it’s probably the loss of inflammation but I’ll take it.
So sorry to hear the problems you are having. With chronic illness, we have to let out that anger and emotional pain every once in awhile. Good for you trying to make small changes that will impact your health in big ways hopefully. I have struggled with food lately for myself and have been cooking different meals for my boys and heat something simple or eat a salad for myself. It helps me but it stinks.
Luckily I like salad and have been looking into kale bowls with fresh stuff mixed in. I just hate buying all the extra stuff to make them. I know my family won’t eat the same way then I end up making two different things. Sounds like you can relate. When I gave up gluten I thought I was losing a limb. I still feel that way when pizza is a craving but for the most part, I’ve adapted. It’s just frustrating as hell!
I don’t blame you for getting mad and I’m glad to see it’s fueling you to make even more changes. Health and medicine are so frustrating.
It is!! And I am still dealing with my eye issue. I feel as if it is getting a little better as long as I use the drops and ointment each and every day, several times a day. The eye thing and everything else makes me want to just crawl into bed sometimes.
Prayers lifted up for you!
Relax and enjoy your weekend! 🙂
Thank you for the prayers! I have some training to attend this weekend for church but the rest should be relaxing. Have a great weekend!
I feel for you and hope somehow, someway your health does improve. Venting does make me feel better — temporarily.
People in real life have referred to me as a Stepford Wife. Not in an insulting way but the pressure to keep it all together gets to me. If just feels good to admit that I don’t feel all that great.
I hope you feel better real soon.
Thank you. I appreciate it.
You can do this! I know you can. I’m glad you had your moment, though. We all need to get that stuff out before it weighs too heavily. It can impact your health too, so it’s good to cry or scream it out. You’ve done great with your health. I’ve been thinking I need to take lessons from you!
You are sweet but do not take lessons from the sick girl. LOL. I feel a little more in control today. The comments from you all have made me feel a lot better. Thank you.
Ti, you are such a strong woman, I know that you can do this. The changes you are making will work and you will just keep doing what needs to be done. Crying and venting about the suckiness of it all is totally understandable – I do it when my AIH gets the best of me (which seems to be ALOT lately). I love how open you are about your health – definitely inspires me. Praying you feel better soon 🙂
Thanks Nadia! Last week I wanted to be like a Murakami character and just climb down into a well and vanish. I don’t get depressed, that’s not in my make up but I do get angry and frustrated and of course that doesn’t help the BP situation. Sometimes I feel the need to hide. Today, I feel better about it all but my headache is still on the fringes which means either caffeine withdrawal or I am still worked up about it and just don’t know it. I have leader training tomorrow for church and then a concert at the park to attend and then FEAR the Walking Dead to watch so the weekend should be a good one.
I’m so sorry. I had no idea you’d been having such a rough time.
My mom has lupus and has been dealing with it for over 20 years. She had an older lady who really helped her out when things got tough. If you’d ever like to chat with her, let me know. I know firsthand talking to her how difficult it can be when your body is fighting you and no one really understands.
Thanks Jenn. I’ll be sure to contact you if I ever need to reach out to another Lupie. My family is good for the most part but sometimes they have a hard time understanding the degree of pain I am in. It’s funny because I’ve been negative for Lupus since I went gluten free but I still deal with the damage it did when I was positive. My doc still thinks I am positive for it. He says it’s playing with him by being just barely negative.
I am sorry to read of your recent difficulties. Health concerns can be very stressful, which is probably why your BP did not go down at that time. Taking repeated readings in a clinical setting during a nerve-wracking appointment will not offer a realistic picture. Check your BP at home and send your doctor the readings. It sounds like you are doing the best you can and have set good intentions. Just try to stay in the moment as often as you can. Come down out of your head and just be with your body and the things around you. As Tolle points out, you can’t manage the future, but you are always safe in the now.
Thank you so much for those words. I have to get into the habit of taking my own BP again. I do try to get out of my head but I am not that great at it. I need to figure it out. Thanks again. Have a great weekend.
Health scares can be crazy-making, for sure. Do your best and listen to your instincts. Focus on little victories, wherever they may be!!! (And allow yourself to get angry if it helps. Ain’t nothin’ wrong with that!) 🙂
When my doc mentioned all that horrible stuff, I sort of blew it off and then he stopped typing, looked at me and said “I mean it.” and I just about passed out. My BP was a first but the red blood cell issue has been a problem since the beginning and I just figured it would figure itself out like all the other ailments I have as a result of Lupus. With my body, nothing lasts for too long… but then it settles somewhere else.
Thanks for the reminder to listen to my instincts. I don’t do that when it comes to my health.
Oh, Ti! I’m sending bunches of virtual hugs… You know, it’s a great thing that you’re keeping such a close eye of all of it. And you ARE making the right choices too. Things are bound to improve! Much love ❤
That virtual hug felt so good! I do hope for some improvement by December. I feel like that’s a reasonable time frame to see some results. Not perfect results just some improvement. Have a good weekend! I plan to hit a concert at the park this weekend and I will be there munching kale and loving it.
Mad is way better than self-destructive! (my often-used mode of coping) You’re moving in the right direction, and I send virtual hugs as well!
Thank you. How have you been? I haven’t seen you online too much.
It’s so frustrating when the things we change to manage our health just don’t seem to be the fix. But you do have a plan to go forward, and this place to vent (and friends here to listen!). (And thanks for the reminder to get up and away from the desk–I need to do better with that too!)
BTW, here’s a (non-book) blogger in your neck of the woods who is dealing with Lupus and related issues–you might want to look up Erin at http://www.queenofspain.com. And I know Andi (Estella’s Revenge) has written about low iron and transfusions recently.
Oh yes, I’ve spoken to Andi about her transfusions. I know what to expect should I have to get them but I sure wish I could skip it! I will check out that blog you shared. Thanks for listening.
Ah, Ti, I feel for you. Truly I do. Health stuff is just awful. I hate it too. Good for you for making a plan. That always makes me feel better, even if I don’t always stick to it strictly. A goal is good. Small goals, but always moving forward. Frustrating when you try hard and the numbers or tests still come out out-of-sync. I’ll be keeping you in my prayers. Keep me in yours. My tests were not as good as I hoped. Going to see an endocrinologist in a couple of weeks. Still losing weight and working hard. Sigh. We’ll soldier on.
Thank you for the kind words. I will pray for you as well. Keep me posted.
Soooooo frustrating! I’m so sorry.
How long have you been gluten free? I had dangerously low iron and low everything else too, before I started eating gluten free, despite a good diet and tons of vitamins/supplements. It took a few years, but eventually my iron levels came up (even without supplementation during those years), and it was normal last I checked. I guess what I’m saying is, there’s hope!
I have been GF for about 5 years now. I’ve been low iron was about 1.5 years. My level was a 6. Extremely low.
I’m always amazed at how much you do and now to find out you’ve been at low-energy, too! Seriously, I’m sorry to hear it has been so bad, and I hope you feel a lot better soon. There needs to be so much more research on autoimmune diseases. I’m glad you have a doctor who takes your health seriously and isn’t telling you it’s all in your head!
HUGS and plenty of XOXO!! I find that blogging or at least writing about something that is bothering me makes me a lot less worried about that thing. Hope you feel much better as soon as possible. Everything you wrote above are doable, plus they are healthy habits so nothing to lose. Cheers to you!!
I am not getting your posts. I do not like this. If I were, I would have responded much, much sooner.
You are a nutrient sieve, and I am a cholesterol farm. As in, my doctor has never seen levels as high as mine in someone as “young” as me. I have given myself the year to take back my health. Exercise, making healthier choices, drinking water – it has been three months and every day is a struggle. Still, this is a battle we both can win. We will win it because we have to win it, for our family and more importantly for ourselves.
Good luck! More importantly, {{{{{hugs}}}}}
Does high cholesterol run in your family? I have a co worker here that run marathons, eats right, weighs exactly what her doctor’s chart says she should and she has glaucoma, diabetes and the highest cholesterol I’ve ever seen. I told her she’ll be the healthiest cadaver at the morgue. She didn’t find it funny.
It does run in the family, but I am also overweight and know that is contributing to it. I want to avoid medication if possible. I tried it last year, and it made me feel terrible.
Your coworker? Wow. That would just suck. I’m sure she has thought of giving up and giving in more than once with those types of health issues.
The coworker… nope. She just soldiers on.
Weight. Bleh. Some people with lupus lose weight but I was not one of them. Exercise does help but I hate exercise. I know with my coworker, she can take her blood to check for sugar at the top of a 10 min walk and then take it after her walk and it goes down like 20 points. You wouldn’t think a 10 min walk would do much, would you?
On Tue, Sep 1, 2015 at 8:39 AM, Book Chatter wrote:
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Interesting. I hate exercise too. I’d much rather lose weight through diet, and we all know how difficult that can be.
I don’t know. I hit lifetime on Weight Watchers twice without exercise. That was a good 15 years ago. I think now, with my metabolism the way it is, something is needed but I always gain weight when I exercise. And no, it’s not that whole muscles weigh more than fat thing. When I have the energy to exercise, my body reserves all stores thinking I am dying or something.
On Tue, Sep 1, 2015 at 5:12 PM, Book Chatter wrote:
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I’m the same way. When I was exercising hard in the month of July, I gained weight. It pissed me off!
So sorry to hear this! I always think you do a great job of eating well – especially for someone whose family is always on the go. I know you’ll do your research, find the doctor who can help you best, and do the leg work.
Thanks. I may have to change my insurance here too because our predicted premiums for 2016 are through the roof!
It’s absolutely a necessity of those with chronic health issues to vent every now and then. If we keep it all bottled up, we will explode. I hate you’re going through all this and it’s just one thing piled on top of another. I get it to a degree. If you ever need to vent, get it out! I’m always here if you want to really tell it off. 🙂
Thank you. Most days I can handle it well but on those really low energy days, I just can’t. I’ve been okay the past few days though. Looking forward to a long weekend. Thank you. I’m here for you as well!