Help wanted (Score so far related)

[Jersey Girl]

Don't know if this would work but when we slow cook ham (gammon joint), we often cook it in cola which breaks down the stingy bits in between the tissue. Maybe you could try orange fizzy drink for beef like tango or Fanta. I'm sure orange and beef is a good combo.
(When we do this with cola, we only put ham and Coca-Cola in the slow cooker with the ham covered with cola (also doesn't taste as nice with cheap cola).

Cola drinks have citric acid in them. I think it's the acid that makes the meat go tender. Like the wine or vinegar.

It's nice going in the "cheaper" shops and finding little niknaks. I quite like the middle aisle of Aldi(you probably have one, a cheaper supermarket but has interesting things in the middle) it changes often so it's like oooh I wonder what they have this time. Not that I buy much of it, I just like looking.

I hardly ever get into the store I mentioned and hardly ever buy anything in the Dollar Spot. It's really fun to see all things they have. Colorado does not have Aldi! I wish we did!

I love the Range but don't go often because it's out the way but it's like going on an adventure lol.

I've watched shopping trips and "hauls" from the Range! I would LOVE to go to Primark! We apparently have them on the East Coast but I don't think anywhere else. I've watched a lot of UK related store videos. Oh and your TK Maxx is our TJ Maxx over here! See? I know stuff.

Oh my gosh do you have Pret a Manger? I ate at one of those at Heathrow. Loved it!

It sounds like things are going well, glad lé foot is doing well. Did you have a nice holiday season?

Our holiday was mostly nice, yes. I kept things super simple. I had to watch my furgrandbabies over Christmas so we had early Christmas with half of the family and then later the other half came over. It was a bit stressful for me to watch the furbabies but they're so adorable they cheer me up!

What about you and yours?

[msnobody]

I’m going to mention this in this thread. Have you felt a sense of loneliness as you have gone through these GI issues? I know I did in my first few years of having CML and its treatment, although I had tremendous loving support of family and friends. Placing this in the thread as it may help validate someone else’s feelings as they experience their own issues.

[Jersey Girl]

I’m going to mention this in this thread. Have you felt a sense of loneliness as you have gone through these GI issues? I know I did in my first few years of having CML and its treatment, although I had tremendous loving support of family and friends. Placing this in the thread as it may help validate someone else’s feelings as they experience their own issues.

I took the opportunity to reply to your question in detail (giving examples) privately. The short answer is YES! And I don't know how I haven't lost my mind entirely already. For the most part my family understands but there are times when I think I haven't been heard at all and I feel invisible. I'm not one to cry out in pain or go around moaning. You wouldn't know I was in pain unless you took a good long look at my face or noticed that I'm not talking or that I've gone off by myself. Those are signs in me that I am suffering. I tend to be very stoic, silent, and get through whatever discomfort there is until it's over with. Then I pick myself up, get busy, and keep going on whatever I can manage to do to play catch up. If I were to give voice to how I feel in those cases, it would probably sound like a howling scream.

The high levels of anxiety I had are gone now. I still keep my phone shut off most of the day and I just the other day reconnected the door bell on the house. I had removed it because the sound of it got on my nerves. I had a startle reaction to sound at the time. My energy level is normal again.

I do feel underserved by the gastro practice. I've been a year under their "care". Never been tested for anything except the first scopes when they did some biopsies and I don't have a solid diagnosis. I've never been questioned or educated about risk factors and on one has gone over my meds which the Levo can be a risk factor for someone being treated for Hashimomoto's resulting in GI issues...which is me. And I'm tired of knowing these things without the gastro folks ever initiating a discussion of these topics with me. If you look a few posts back you can see my daily log of weight checks I'm doing in advance of seeing the gastro doc next week. I intend to make that appointment count for something. I'm also going dressed in layers so I can peel off a layer and let him SEE what my body looks like and show him a before photo on my phone. I have no idea if that'll shock him into reality or not or if that's even a good idea but I want him to know what I am seeing in my own self because it's alarming.

Every day I wake up feeling fine. Then I go about the business of trying to figure out what to eat every few hours to get calories in me. It's early evening when the symptoms start. I'm so sick and tired of thinking about food. Sick and tired of reading ingredients and nutrition labels. I just want to EAT. I don't think anyone including family gets what my days or nights are like. Everyone around me eats whenever and whatever...and I'm here obsessing about what's going to trigger symptoms and what might not and eating is something I have to do every day, multiple times a day to stay alive like the rest of the world only with this, eating can end up with me in pain for about 6 hours straight. That means I will stay awake until the wee hours of the morning, finally go to sleep, wake up later so my day is shorter and I don't know how to get 3 meals and any snacks in to me before it's legit bedtime and I don't have calories or nutrition to spare at this point!

So yes, loneliness is a main factor mental healthwise. Like I am rowing the boat alone over here and to be quite honest, the only people who are paying full attention to detail are those of you who post on this thread and follow what is going on with me. I can not tell you all how much that means to me. I live in virtual isolation with this, I can't leave to go out many places at a time for very long. I want to go the to the movies and see the new Dylan flick and I don't think I can be there for 2 hours plus travel time. I haven't had my hair cut since June because that'll take a total of 3 hours. I'm in dire need of a dental cleaning but I can't get there from here unless they can do it in sections so I don't have to stay there that long because this is NOT business as usual. There are good days when I know I can go places, even 3 stops at a time but overall I feel SO entirely limited by this in every possible way.

The isolation is probably the worst. I'm an introvert by nature (and only child) who can keep myself occupied for days and weeks on end because I tend to live in my head anyway so I never run out of ideas. But that doesn't mean I don't want to ever see people. I do get visits from the kids but it's not the same as feeling free to go out and about with them and just do whatever we'd normally do. There IS no normal for me right now.

I have an artist friend I've been wanting to visit since before Thanksgiving as he is currently housebound except for his medical appointments. He only lives two streets away and I still haven't gotten there to see him. I feel terrible that I can't serve others like I would normally do. He just turned 90 and he's a Scot. All I want to do is show up, sit and give him a chance to complain , and go be a friend to him. So he is sitting over there isolated and I am here two streets away also isolated. This makes me feel like a failure. I just want to go over there and show up with one of my tartan scarves and one of my hats on (He always smiles when he sees me in a hat!) and bring him the Walker's shortbread I got for him. I don't want him to feel forgotten or like he doesn't matter, you know what I mean?

So yeah, loneliness is a main feature of this mess. Not feeling heard, not feeling seen, not feeling fully served and wondering why. But, and I've said this before, I have never lost hope. I always think I can be better. I've experienced better so I believe it's possible. I just don't know exactly how to get there from here.

Okay I am not sure what I all I just posted here but it's going up. If I made a fool myself I figure I can live with it!

p.s. Currently mulling over whether or not I can eat pasta and parmesean with my chicken. Like what's the best day to give that a try in case I end up in an ER on morphine again in the dead of Rocky Mountain winter. See? It's like 2 am and I'm obsessing about food and the ER over here. One night I should post my inner dialogue on here.

[IWMP]

I'll respond to all together so I don't put multiple posts in your thread.

Msnobody, what is CML?

Jersey Girl, You didn't write anything that you should worry about, I think, again, you are showing us how strong and amazing you are. You are fighting. Even when some days you might not feel like doing much, you are still planning and preparing and trying. It's even more amazing that even in your struggles, you are still thinking of your neighbours needs. I bet does something in the universe. I think you are making steps in a forward direction and I hope that you and your health care providers can find something that will catalyse your healing. I hope next week goes well and something productive comes from your appointment. Fingers crossed.

Sending lots of love still. <3

Christmas here was nice. Mum visited and it was great to have her around. Strangely her car battery died for the second time she has visited. I think the long drive killed it. So both this time and last time she came to us we spend a couple of days sourcing a car battery which is a very difficult thing to do during Christmas break. But I did discover that I'm capable of changing car batteries and that it's easy. Unfortunately the alternator was the problem and in the end up she had to have it towed to a garage and pay for repair. So that was an adventure lol. I've been very fatigued for the past two weeks. So fatigued that I have started OTC vitamins and iron which if you know me is like last resort because the fillers in tablets make me unwell, 3 days in and I have bowel issues (beyond the norm) but I'll push through. Was up in the night with wind pain everywhere, even in my shoulders and back. Could hear my bowels going crazy. Anyway. I'm sat in McDonald's. Needed batteries because I somehow thought it would be a great idea to invite a neighbour over for takeaway and to play computer games but now I'm wishing I didn't and I could just nap instead :/

[Jersey Girl]

Bringing this forward again.

Regrouping on the daily weight checks. The Jan 3rd check is wrong. When I stepped on the scale today it threw an error code. Replaced the batteries and now I'm right in the ballpark of gaining. I'm going to keep this list rolling forward so when I go on the 28th I've got it documented. Going to put a previous weight check from the last follow up and star weight checks on the doctor's scale. Don't let it scare you, folks. I dashed out of the house on basically no breakfast and cup of tea, no water.

Dec 27: 78*
Jan 2: 86
Jan 3: 82 (this is probably wrong)
Jan 4: 85.4
Jan 5: 84
Jan 6: 84.5
Jan 7: 83.4
Jan 8: Skip*
Jan 9: 84.8
Jan10: 85.4
Jan11: 84.0
Jan12:
Jan13: 82.2*
Jan14: 82.2
Jan15: 80.4
Jan16: 82.4
Jan17: 85.4
Jan18: 85.8
Jan19: 86.0
Jan20: 83.6
Jan21: 85.0 ER
Jan22: 84.8
Jan23:
Jan24: 86.4
Jan25: 85.8
Jan26:
Jan27:
Jan28: Appointment

Notes:

Jan 8 -Carrots want me dead. Stabbing pain mid-abdomen for hours. Too much fiber? Second try at reintroduction.
Jan 13- 2 meals evening symptoms

Brain Dump Notes:

Gastritis
Diverticulosis (High Fiber)
(Which came first? What results in SIBO?)
Why no further testing? Where is my diagnosis? Ex: Methane vs Hydrogen
Where is patient education?
Dietician: How can she support me without a firm diagnosis? Methane vs Hydrogen

Risk Factors for SIBO:

Diverticulosis
Hashimoto's (Thyroxine oral solution-pre authorization)
Sharp turn from transverse colon to descending colon as per CT scan at ER?
Long term use of Pepcid, antacids

Treatments:

Rifaximin
Pepcid (self titrated off approx. 1.5 to 2 months ago) (self treatment)
Increased fiber (Self treatment)
Probiotics (VSL #4 shelf stable)
FD Gard
Simethicone
Abdominal massage routine

B12??
Digestive enzymes??? (Lipase for fats? Protease for protein? Anything?)

Test for SIBO:
Endoscopic aspiration small intestine

Follow up:?
CT Scan

Other antibiotic?

Food related:

**2 Diets (low Fodmap..
Lactose intolerant- no
Gluten intolerant-no
Death by food: Carrots, Eggs, Gouda Cheese, why?
Common enemies: Fats, Sugars, empty stomach

Out of Pocket Expenses (not counting how much food I've wasted)

FD Gard $100.00 per month
VSL#4 $1.33 per capsule ( 1 per day per month $40.00, 2 per day $80.00, 3 per day $120.00)
Simethicone $ approx. $.05 per tablet ( 4 per day per month $6.00 I typically take more)
Lactase Tablets (difficult to determine, take them hit and miss)

Somewhere in the neighborhood of nearly $200.00 out of pocket with NO prescribed medications.

Check into this: COVID-19:
Nirmatrelvir and ritonavir are protease inhibitors that block the replication of the SARS-CoV-2 virus.

In Paxlovid. Are they in the vaccines?

[Jersey Girl]

Making a note to reply to Nicky.

[msnobody]

Msnobody, what is CML?

Chronic Myeloid Leukemia.

I’d post more, but it’s late and tomorrow is a workday.

[IWMP]

Msnobody, what is CML?

Chronic Myeloid Leukemia.

I’d post more, but it’s late and tomorrow is a workday.

oh gosh I'm sorry. are you doing well now?

[msnobody]

Chronic Myeloid Leukemia.

I’d post more, but it’s late and tomorrow is a workday.

oh gosh I'm sorry. are you doing well now?

Yes, doing okay. On the most tolerable medicine so far and at a low dose.

[IWMP]

oh gosh I'm sorry. are you doing well now?

Yes, doing okay. On the most tolerable medicine so far and at a low dose.

Is it helping? I hope things are going well.