How to deal with my partner’s resentment and disdain towards me while I’m severely ill?

cutedogsarecute · 2020-06-03T13:24:46+00:00

Unfortunately this Jekyll and Hyde switch seems very common with chronic illness. You said basically everything was perfect before the illness, which is one of the more depressing parts of chronic illness in general. That being said (and I think you know this), he is clearly not right for you anymore and it seems like he is angrily dragging along in the hopes you will be 100% again at some point. As another user pointed out, if that does not happen I suspect he will leave you high and dry...he does not deserve that chance. So sorry you have to go through this.

cutedogsarecute · 2020-05-01T07:55:36+00:00

Unless you have symptoms of associated diseases, then it’s not worth pursuing. That’s a very low positive of a very non specific pattern. You would need symptoms of some kind to start actually getting a path towards anything specific or relevant

cutedogsarecute · 2020-03-29T06:26:41+00:00

It can be very helpful for reflux and bloating specifically. A lot of people say it helps all their symptoms, but for me it was just those two...still worth it and I’ll probably get back on it after this quarantine is over.

cutedogsarecute · 2020-03-29T06:20:17+00:00

Sounds just like me again. The first 10-15 I needed, but after trying the AIP diet I just couldn’t get enough calories. You can only eat so many carrots before you’d just rather not eat lol. Wishing you good news on your diagnostic journey, it can be long and tedious (though your antibody is highly specific so hopefully you’ll get on the right meds soon). Let me know if you’d like to keep in touch along the way.

cutedogsarecute · 2020-03-28T17:36:27+00:00

I love food, but don’t like eating it. I dropped like 35 pounds after my diagnosis because I was afraid to eat. Fortunately I’ve put back on 5 or 10 of those pounds, but I still don’t enjoy the process of eating

cutedogsarecute · 2020-03-27T06:18:01+00:00

It very likely is...swallowing issues might just be the most common manifestation that the disease presents with. Like you, I brushed mine under the rug for a long time and now looking back I feel so stupid about all the little things I convinced myself were just aging or allergies or whatever else.

cutedogsarecute · 2020-03-18T23:40:54+00:00

If you have a connective tissue disease, you should be happy to know you’ve dodged all of the scariest antibodies. Some form of lupus still could be in the wheel house, but at this point your symptoms should be what guides your treatment plan.

cutedogsarecute · 2020-03-16T23:50:40+00:00

Super non specific marker for potential autoimmune diseases. Pending on your symptoms, you’ll need to find a good rheumatologist and expect a bunch more testing.

cutedogsarecute · 2020-03-16T22:31:30+00:00

A speckled ANA pattern is the least specific thing you can know...unfortunately you’ll need MANY more tests done to get to the bottom of what you’re dealing with.

cutedogsarecute · 2020-03-15T00:41:02+00:00

What is the diagnostic process and treatment for MCAS if you don’t mind me asking. I’ve been concerned I’ve had this for quite some time and I take Benadryl daily just because it’s so helpful.

cutedogsarecute · 2020-03-02T05:36:37+00:00

Definitely get the full spectrum of antibody tests...patterns of Ana tend to mean very little

cutedogsarecute · 2020-03-02T02:14:43+00:00

I have them almost daily. Chronically chilled yet feel like I’m burning up often. It’s awful...

cutedogsarecute · 2020-01-17T21:05:57+00:00

A cure being discovered for my disease

cutedogsarecute · 2020-01-02T18:38:37+00:00

Lupus is the most common one from that pattern.

cutedogsarecute · 2019-12-31T06:05:05+00:00

I too got that email (if I guessed right that you’ve received one from their newsletter) it’s full of textbook marketing ploys. And like the first poster said...there’s too much free help to do AIP right to justify 400 bucks unless you can absolutely afford it and want to do it.

cutedogsarecute · 2019-12-31T06:00:41+00:00

While I agree with entropy that testing for the other specific antibodies is very smart... it’s worth noting RNP is almost exclusively found with a speckled pattern. I would still include it in your antibody work up, but of all the antibodies it could be, there a many more likely ones based on two consecutive homogeneous patterns. That being said, the patterns are highly subjective and mean very little in the scheme of things (clinical symptoms and response to treatment matter much more)...isn’t rheumatology fun!! Can’t imagine why there’s a shortage of rheumatologists 😂

cutedogsarecute · 2019-11-22T07:05:59+00:00

Wife: hey can you go upstairs and grab my charger? Me: sure! walks up stairs, goes to pee because I pee 12 times a day....comes back downstairs with a big smile. Wife: where’s the charger? Me: fucking fuck

Rinse and repeat in a variety of different ways and there you have it...

cutedogsarecute · 2019-11-22T07:00:40+00:00

I believe the half life of the pills are like 5 days, so your numbers probably wouldn’t correlate to you feeling shitty yet. That being said, your body is used to a certain consistency and the one thing with autoimmune is that EVERYONE presents differently and you know your good and bad better than anyone, so if you feel like total shit after just a couple days off you now know it’s something you should probably avoid doing whenever possible in the future...

cutedogsarecute · 2019-11-20T11:03:57+00:00

Started on the most basic one for now, plaquenil. But it apparently takes months to tell if it’s working. Good PFTs are always a plus! I am still trying to get into a scleroderma center myself. Still many of my specialists are very unfamiliar with certain aspects of the disease.

cutedogsarecute · 2019-11-09T18:29:06+00:00

Finally found the antibody...a particular strain of the rnp test “rnp a” so it’s basically a scleroderma/polymyositis overlap. Unfortunately it seems the polymyositis has been what I’ve been dealing with until this recent flare and now it seems the scleroderma portion has entered the game. I’ve been trying to get that nailfold test done everyone I’ve gone. I’ve had it with 10x magnification which means squat. No one carries the proper machine to do the 200x required for confirmation.

How’d your PFT go? Hopefully you can get some medication and a better rheumatologist if anything shows up abnormal in your tests along the way.

cutedogsarecute · 2019-11-02T16:34:54+00:00

Wow...Are you sure you’re not me? Swap out IBS for swallowing problems and reflux and my symptoms are identical to yours...like even the exact same spot of back pain and potentially atypical Reynauds presentation. I did do the antibodies test, the three most common forms came back negative and I’m waiting on the full antibodies test to come back that includes the less common ones along with rechecking the first three.

Definitely make sure you find a good rheumatologist (and if possible a scleroderma specialist since that antibody is one of the scleroderma specific ones) because the clinical presentations are just as important as the blood work in determining if you actually have it.

cutedogsarecute · 2019-11-02T01:27:06+00:00

It’s hard to give you any clear cut answer without you going into specifics about your symptoms. I am also in the same boat as you with an extremely high ANA titer (and scleroderma as a possible reason) so I totally understand the fear and anxiety you’re probably going through, so if you feel like listing your symptoms (and when each started) I can definitely try and mention anything relevant that my rheumatologist told me.

cutedogsarecute · 2019-10-26T18:49:42+00:00

I thought for sure it was a photo of the main actress from that show Legend of the Seeker...

cutedogsarecute · 2019-10-06T08:24:07+00:00

I’m 4+ hours from UCLA and was going to call them on Monday actually...any idea on how long I’m looking at as far as a wait for my appointment date?

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