Sitting here

[JennaShi]

Sitting here with little miss A. She fell alseep with only her face covered under the fold of our comforter 😄 while waiting for her friends to call her back. She was a bit grumpy this morning and think I heard that both girls didn’t sleep well last night. She sure is peaceful when she’s asleep though 😄! So glad to see the weekend again!

Got some labs back today and see my Iron is up over range due to the higher supplement amount, although I’m still anemic: hgb and hct levels are still low but slightly higher than my last labs on 6/29/21. I guess it will take some time to sort out.

MPV and RDW are high above range and am told that rdw will go down as everything else normalizes. MPV has constantly been high (with the occasional normal result, maybe two or 3 or a handful tops) since 4/6/17. Primary says it’s not concerning unless platelets are low. Platelets haven’t been low for a couple years now I think but mpv was high regardless. I asked rheumy if it could be autoimmune related and she brushed me off saying no and to talk to my primary. I was able to send her an article talking about how drs are exploring Mpv to see whether there is a correlation, but I know that it can have other causes. I don’t want to make a mountain out of a mole hill but sometimes I would like more of an explanation for these strange random things.

Spo2 still normal but still have had more noticeable breathing issues; I’m just winded feel some pressure on my chest when taking deep breaths and sleeping on my back. Rib still hurts intermittently with sudden pain when moving and/ also when taking deep breaths. It may be as JMiller described about inflammation. Sometimes I wear higher rise jeans and although it doesn’t push too hard, it may irritate it a bit.

Ct scan was cancelled due to Rheumy ordering it but not authorizing it after multiple calls. Hoping things get sorted after multiple back and forth calls.

I think anxiety and stress has played a big part these days and am hoping to be able to let things go and move on.

Kids are back in school full day and it has been nice to enjoy more quiet time. We are planning to move to the next town over in about a year to get some more property with a house. This has been my safe place thought as I look forward to moving away from our first home as a family, the not so cool neighbors, and not managing our HOA/ no more HOA fees and stuff 🙌😁. It also gives us an incentive to finish up renovation projects.

Are there things you’re looking forward to this year/ going into next?

Wishing you all a well weekend!

Will attach interesting article about MPV if anyone is interested:

frontiersin.org/articles/10...

[Spanielmadlady]

Hi.jenna .I've had breathing difficulties and pain for over 7 years.first they insisted nothing was wrong,then they insisted it was asthma now they think its inflammation related to my lupus. For about 5 years I couldn't lie flat due to discomfort and feeling I couldn't get my breath properly and it's to do with gravity so sleep propped up with loads of pillows ....v pillows or a v formation is most comfy. Hope you are pacing yourself with your renovations and I hope you settle when you move and get some lovely cool neighbours. Keep smiling big hug 🤗 xx

[JennaShi in reply to Spanielmadlady]

Hi Spanielmadlady, I’m so sorry it has persisted 7 yrs long, with doctors unsure and making sleeping not as enjoyable. I’m glad to hear that they finally came to a conclusion. Can I ask what tests they ran to figure it out? And have they given you anything for relief?

That’s great that you have found a position with pillows that works to bring you some relief. I typically sleep with a thin pillow for my head and lay on my stomach, it yelps with my neck and upper back pain and relief from the pressure on my chest.

This is new information too; I didn’t know that Lupus can affect the lungs. It seems simply that Antibodies/ immune system can attack anywhere and I will just keep learning from you all!

[Spanielmadlady in reply to JennaShi]

Hi jenna.lupus attacks anything with connective tissue so for me it's my heart,kidneys and lungs.there is also pulmonary lupus I've had my Rheumatologist I'm asthmatic my chest specialist say I'm not as i have no triggers .it all started with pleurisy and pleural effusion which inflamed my heart.i was put on prednisalone everytime they reduce the pred my lungs flared and I'd have pain ,cough and breathing issues. Lung function tests always came back fine and my sats are always above 96% .chest xrays and hrct scan shows thickening at both bases so I was diagnosed with bronchiectasis.i have 3 inhalers,carbostytine (not spelt right sorry) and prophlatic antibiotics to keep lungs clear. I also have a nebuliser at home.to settle the argument about asthma they sent to an asthma specialist who did a larnyxoscopy .everything was fine except my voice box is hypersensitive.i have no nasal drip,reflux or excess mucus in my throat so they are now sending me to an airsac specialist as the conclusion is now the inflammation is lupus related.prior to becoming ill id never had any breathing issues never smoked wasn't over weight and was active.what they want to do next is watch me drop the steroids and see what happens when my lungs flare. I'm not relishing the prospect of going through it but it needs to be done .no appointments available so it won't be yet xxxx

Just to add i have 6 hospital admissions in 5 years with pneumonia .they now think it was pneumonitis ( non infective pneumonia) which you guessed it is connected to lupus 🙄 xx

Happy birthday A hope you had a great day x

[JennaShi in reply to Spanielmadlady]

Wow, you’ve been through alot, and it sounds like it took sometime/ going through lots of symptoms and appointments, for them to come to a more definitive conclusion of Lupus. You going through it all again doesn’t sound good to me either; it sounds scary. But it also sounds like they will have you in their care and hopefully be able to help you better and others, who are going through the same thin, as they learn more about what happens in this process.

Hugs, and please keep us all in the loop on how you’re doing, as they get you an appointment and get things rolling.

[Spanielmadlady in reply to JennaShi]

I will thank you.whilst its scary it's what's needed consultants tell you to go away and drop steroids but then it's your gp who helps you out when you start to struggle.by time you next see consultant you are in the same place . Hope you get some answers from scan.my hrcts have never taken long xx

[JennaShi in reply to Spanielmadlady]

That’s a good point of view, and another thing that can be scary: consultants sending you away and just giving you steroids without figuring what the problem is.

Thank you and that is good to know!

I got the notes and it’s normal so I guess this part isn’t the problem, which is good news. I’m hoping an explanation may be found soon.