Always grateful for a beautiful day.
Always grateful for a beautiful day.
I haven’t posted an update in a while and thought I would share how I’ve been doing. I still do not have a diagnosis and it has been a huge struggle trying to get one. I have been trying to seek out alternative therapies for the colonoscopy. When I started the prep it did not go well (that can be expected on some levels) but it left me extra weak, nauseous, and downright sick so had to stop half way through.
My GI doctor suspected that I may have SIBO (small intestinal bacterial overgrowth), among a few other guesses such as diverticulitis, malabsorption, and slow bowel motility. Maybe even Crohns or IBS. IBS seems extremely likely but am not sure yet. It has been a pain trying to get the hydrogen breath test needed through insurance to see if I do have SIBO. I think this test can also diagnose h pylori and carbohydrate malabsorption. I will have to pay for this test out of pocket which I am totally willing to do. You can’t really put a price on health right? I have an appointment next week to discuss this test among a few other things.
The good news is I was able to get 4-5 lbs since I last updated. I did have a flare or episode last Saturday (still going through it but it’s tapering off, hopefully!) that prevented me from hardly eating once again and kept me in the bathroom a good portion of the time but am happy about the weight gain. I am hoping to be able to keep this up and not drop back down again.
I still struggle most days either with eating or bathroom problems. When I have these flares it also sends my anxiety into a frenzy as well, so that is no fun. If anyone has read my anxiety posts then you will know what I mean!
I am remaining optimistic that this will all get sorted out soon. I’ve heard there are a couple alternatives to colonscopy as I mentioned earlier so I will find out about those and update again when I have some new progress/news about this.
Thank you again to everyone who has sent me well wishes and sweet messages over the past few months. They all mean a lot to me!❤
Very frustrated with continuing health issues, trying to hang in there. :(
This is a great goal for me since I’ve been ill the past few months and things around my house could definitely use some Spring cleaning!House
Had a great meditation session outdoors today. (me in picture) :)
I have returned to 43T after a break, it feels good to be back. :)
In one week I have to go for the colonoscopy/endoscopy. I have to admit I’m quite nervous about it. I’ve had an endoscopy done before, yes, but that was a huge deal for me and and prayed and prayed and prayed some more that it would all turn out okay. It did, I’m thankful for that but the thought of being put under once again scares me every time! I’m also a bit afraid of waking up during the procdure and feeling the pain. I’ve heard a few people’s experiences turn out that way. This is all just my anxiety talking I’m sure. I’m trying to stay positive about this but I’ve still been having those “what ifs”.
Regardless I still have every intention of getting all these tests done and taken care of so I have some answers and can start to feel alive again. I’ve been spending a lot of time at home mostly in bed. I do still attempt yoga (on my better days) and I meditate/pray everyday.
In the meantime I will try to keep eating (very difficult to do still, if I’m getting 1200 calories I’m doing well) and most importantly try to stay calm. I’ve been mostly sticking to homemade chicken soup, crackers, toast, and avocados/bananas. Occasionally i am able to stomach a few Applegate nuggets and Amys rice Mac and cheese. Not the healthiest diet but I’ve come to learn that these things upset my stomach the least and is better than nothing! I am still on a multi vitamin and try to drink lots water. I’ve attempted both boost and ensure drinks to try to get those extra calories/vitamins, but they both upset my stomach too badly. I’m doing what I can though to survive.
I know I have really been MIA lately and I promise I will update after I have all of this taken care of. I miss all of you and can’t thank you enough for the concern, sweet messages, and well wishes. It’s means so much to me through this tough time in my life. I will try to be on more often and I will be replying to the messages I’ve received. ❤
It has been a very stressful week.
Today I finally had my appointment with the new doctor. I feel confident that we will finally figure out what has been going on. He and his staff was really nice. They were aware of my anxiety issues a head of time and called me back right away to a private room where I could fill out papers. I did panic a little bit but overcame that pretty fast and did well at my appointment.
I had a bit of a wait before he came in. After about 30 minutes or so he came in and was very nice. He asked me a lot of questions and was really thorough. I had a rectal exam done (gross I know but had to be done)and he found no blood in the stool but did say I was very stopped up and said he thought I had slow motility and possibly an absorption issue as I have lost so much weight and am deficient in various vitamins/minerals.
I have been scheduled to have numerous tests done. The first is a pulmonary test because he noticed my nails are very curved and that is a sign of possible lung/cardiac problems. It can also be a sign (in 5% of people) that its gastrointestinal or hyperthyroidism (in 1% of people). That being said I am also getting a chest x-ray and abdominal x-ray. Next he wants to get labs retested a week before my scheduled endoscopy and colonoscopy.
I have to start an enema along with Dulcolax and Miralax this weekend and I will have to do it again before the colonscopy as well. I’m not scheduled to have the latter done until a month from now but I hope to finally have some answers. He did mention that he didn’t think celiac disease was my problem and encouraged me to not eat gluten-free anymore. I will probably stick to it though because I’m used to being without it now.
I will post more updates after I have all of these tests done. I really feared going today but am glad I made the right decision.
Not feeling too great today.
I feel accomplished today.
I’ve been inspired to try something new!
I have been feeling very run down the past few weeks. I get to see the new specialist on the 9th and I’m hoping to God that they can help figure out what has been going on. Everyday is a struggle and I can tell my body is paying the price for it. I’ve lost so much weight, look pale, and hardly ever eat.
I spoke to my doctor today and basically demanded that I needed to know what my consistent lab results mean. They have been consistent for the past year (maybe even longer). I didn’t want to hear that they all looked okay because I know that is simply not true. He told me the mixes of highs and lows meant that I was malnourished and may have a malabsorption problem. He thinks my body is not absorbing all of the vitamins and nutrients my body needs from food/supplements. He also thinks my motility may be slowed down. He is also wanting me to retest again for celiac disease. I have been tested for this twice in the past but it was negative. I am more scared of it being IBD or something worse (I had an online doctor tell me my labs pointed to cancer).
I have been taking a multi-vitamin (and a few other vitamins on and off as needed) for years and it is not making a difference with my labs. I really need to get to the bottom of this. I feel as if I am running on empty and struggle to go on most days. Not to mention it is emotionally draining.
The past few days I have been feeling a strange “cold water/burning” feeling on my left leg (thigh) and I could not fall asleep the past 2 nights because of it. I read somewhere that this can be a sign of deficiency as well but it of course could be a lot of other things too.
I will update next week sometime after my doctors visit and will try to remain positive. I just hope I am really close to being diagnosed so I can treat this and start to feel better.
So grateful for so much.
4. Donated food to the local food bank
5. Put up post it notes all over town with positive messages
I wish these symptoms would just let up.
Making plans for the future. :)
Remembering our beautiful Kate today. It is still very hard for me to grasp that you are no longer with us. I will always remember what a kind gentle soul you were. You have inspired me and you were always so caring and kind when sending me messages or replying to my posts. I’ve been thinking about you a lot lately, I lit a candle for you today. You have touched so many peoples lives and are deeply missed by all of us.
You are forever in my heart❤
The angels looked down from heaven one night
They searched for miles afar,
And deep within the distance
They could see a shining star.
They knew that very instant
That the star was theirs to gain,
So they took you up to heaven
Forever to remain.
Look down on us from heaven
Keep us free from hurt and pain,
You’ll always be within my heart
Until we meet again.
1. Donated $100 to Newtown Youth & Family Services on 12/15.
2. Spent the day cleaning up trash in the neighborhood.
3. We donated all clothes (new and used) that we no longer wear.