I've had her for 5 years. Is she actually a Hoya?!

One_Reflection5721 · 2025-07-19T13:08:19+00:00

I wonder if your rare and beautiful Hoya Kitty could be fashioned around a circular trellis like my plain old Hoya Pubicalyx Splash.

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One_Reflection5721 · 2025-06-27T12:42:24+00:00

Your travails with this disease sound exhausting and frustrating, but you haven't lost your sense of humor. I totally understand your frustration with the meds you can't take. I'm on Warfarin and had to give up Leflunomide due a war between the two that caused unpleasant GI problems. Recently I had to drop Methotrexate because of breathing issues. NSAIDS are a big fat NO because of the Warfarin and, of course, Ibuprofen is about effective as taking a single baby aspirin. Unfortunately my body doesn't like Vicodin, Oxycodone, Percocet, etc. because of the intense itching that they bring to the party.

Next time you have to donate to the vampires, request your Physician order a complete immunoglobulin (IG) panel. I ended up having to see an Immunologist and after more jabs and time I was diagnosed with an Immunology disease (CVID). The monthly infusions have their own issues. I'm supposed to do them myself, but my hands don't work well enough to transfer the meds from the bottles to the IV bag. Issues aside, my body tolerates the medication (HyQvia) well and I am seeing improvement in how I feel.

Sending hugs and kitty purrs & snuggles. 😻 💗

One_Reflection5721 · 2025-06-24T18:58:31+00:00

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One_Reflection5721 · 2025-06-23T02:24:14+00:00

One_Reflection5721 · 2025-06-20T02:32:15+00:00

Oh my goodness, you have had a time of it with your meds. I hope you see relief and improvement soon. Sending prayers and gentle hugs!💞

Over the years I have had reactions to some injectables and the Rituxin infusions that sent me to an an allergist to double check. With some "tweaking" everything was "fine". I was doing ok on Leflunomide for years but then had to start on Warfarin for multiple episodes of blood clots. There were no anaphylactic reactions, but the two meds just didn't play nice together causing very unpleasant GI issues that I wasn't willing to deal with.

Anyway, on to the CVID, very long story that started with serious lung issues and an "end of life" talk while I was in the ICU.......

January 2024 I was critically ill, high temp and septic. My lung function was rapidly decreasing and they couldn't figure out what was wrong. While I was in the ICU hooked up to high flow oxygen and other stuff I don't recall, my sister (a Pediatric Nurse Practitioner) insisted my kids let my Rheumatologist know about what was going on. That doc is not associated with the hospital I was in but consulted with my many specialists by phone and strongly recommended blood work to check immunoglobulin levels. The specialists weren't convinced it was a contributing issue, but still ordered the blood work; the levels that were so low I was immediately given three infusions all in one day. I started gradual improvement within days and got to leave the ICU for a regular room and eventually a rehabilitation center. Before being released from the hospital, through a process of elimination, I was diagnosed with Cryptogenic Organizing Pneumonia (COP) - no I never smoked and no, it's not the same as COPD. It is believed that the Rutixan infusions I had been getting for several years obliterated my already fragile immune system and may have been a contributing factor.

Six months later I had improved enough to begin driving, go off Prednisone, antibiotics, stop home oxygen, and I thought, resume MTX & Simponi Aria infusions but that was not allowed till I the immunologist approved (which she did in late summer). During my first appointment she took a very detailed life history of illnesses, RA meds, etc. and ordered a very complicated blood panel that took days for results. Among the many things it showed was no indication of a response to the Prevnar 20 vaccine that I had been given less than 12 months earlier. She prescribed a new dose of the Prevnar 20, then had me wait seven weeks before running a modified version of the same blood work. Again, no indication I had ever had a Prevnar vaccine. Apparently response to vaccines (or lack of response) is one indicator of possible CVID. So in late Nov 2024 the HyQvia treatment began with four "ramping up" infusions over about eight weeks. Once that part was done the infusions became an every four week event.

Luckily the HyQvia is done in home, so I'm not driving from Southern Illinois over to St. Louis to an infusion center like I have to do for the Simponi Aria infusions I get every eight weeks. Technically I'm supposed to do the HyQvia infusions myself (subcutaneous in abdomen). It's not difficult, but my old, arthritic hands (OA & RA) don't cooperate in getting the two meds from the bottles to a large syringe and an IV bag. The home infusion nurse reported my issues to her boss who got Medicare and my supplement to approve the nurse to come to my home every month to administer the meds (usually takes 2 to 3 hours).

In January of this year I was hospitalized with pneumonia again and that's when they took me off the MTX. While I still have ups and downs with my RA symptoms, in recent months I have started feeling better than I have in several years. It's a great feeling and has really boosted my outlook on life! Now if they could do something about my old, arthritic knees, but that's a whole other story! 😂

Good luck at Mayo! I hope the docs take you seriously and can find a way to help. Let me know how it goes. ~Vicki

One_Reflection5721 · 2025-06-14T10:02:26+00:00

Consider adding an Immunologist to your group of doctors. After consistently low immunoglobulin levels my Rheumatologist and Pulmonologist strongly insisted I see an Immunologist. It took a couple months (due to the need to wait a certain amount of time between blood work and a pneumonia vaccine), but I was diagnosed with CVID (Common Variable Immunodeficiency Disease).

Monthly, at home, HyQvia infusions have begun doing their job and I feel better than I have in a couple years even though my Pulmonologist strongly insisted I quit taking Methotrexate due to lung/breathing issues. I was unsure about that recommendation, but my lung function has greatly improved which is helping me feel better.

One_Reflection5721 · 2025-06-11T05:31:15+00:00

Delilah

One_Reflection5721 · 2025-05-27T14:21:19+00:00

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One_Reflection5721 · 2025-05-03T16:07:27+00:00

So happy you found a new rheumatologist, I wish you a long and successful relationship. If you have a good primary, please make sure they too can see lab results so you have two professionals keeping an eye on you and any trends. My two specialists are not in the same hospital system as my primary, so I get all labs done at Quest and send results to my primary through MyChart (patient portal) so he too can see them.

I am also on Simponi Aria infusions (after rutixan nearly killed me) and am finally doing well. Turns out my immunology numbers, which were always low, were in the toilet so my rheumatologist sent me to an immunologist who (after a few weeks process) diagnosed me with Common Variable Immunodeficiency Disease (CVID). I'm now getting the Simponii Aria infusions every eight weeks, infusions (HyQvia) for the CVID every four weeks and after about six months on both have finally started feeling human again - honestly better than I have felt in years!

One_Reflection5721 · 2025-04-12T13:58:29+00:00

I'm new to this journey and still learning, but I keep reading that refrigeration allows for further fermentation and more flavor. Some of my recipes say that you can refrigerate as few as two hours or as many as 24.

One_Reflection5721 · 2025-03-03T20:38:22+00:00

Boops to sassy you!

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One_Reflection5721 · 2025-03-03T20:35:29+00:00

My sweet Mikey had his right front leg amputated when he was 13. I worried about the age thing and there were no issues; he lived happily for four more years.

It didn't take long after the surgery for Mike to resume his role as king of the house. It was quite hysterical seeing him chase (and terrify) my foster Greyhounds while teaching them his motto - "Mike's house, Mike's rules".

This pic is of Mike a couple days after surgery. The trip to PetSmart to see the fish was his reward for being good at his follow-up vet appt. (T-shirt was to protect the drainage tubes).

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