Something's not right

[NikkiNicole]

I woke up this morning thinking I was going to have a good day. It's OK but, something's not right. Something feels "off". I'm coughing more than I have been, still getting completely short of breath when speaking. (Is that what I call it when I run out of air after like three words?) I felt like I spiked a fever earlier but then again, I was way hot from cooking and doing laundry. Yet during all that hotness, I had chills. And now ... I feel kind of out of it. I keep having what could be described as a dizzy spell yet I'm not quite spinning just kind of off center.
I am off for the next three days. I plan on doing a few things around the house but ... for the most part, I will be resting whenever possible. I have to have a cavity taken care of tomorrow morning but then I plan on going through some boxes of books (I can do that sitting down!) and sorting stuff to be shelved and others to be given away.
I have just under 4 hours of work left. My head hurts, my face hurts, and sometimes it feels like I'm going to hurl but I'm not nauseous?
Ugh. Why?

[drz]

Have you reported your symptoms to you health care team and what do they say or recommend. Anyone with Wegs needs to keep their treatment team informed about any new symptoms. Failure to do so can result in an early death!

[NikkiNicole]

I will be calling good ol' Kaiser tomorrow to see if I can get in to see my GP. Actually, she's on vacation I believe. My rheumy wanted me to go to my GP (who's also in and familiar with WG) to get the pulmonary function test and to run symptoms by her. Thankfully, the rheumy works with everyone I see up here since she's a bit of a drive away. I mean, not too far, but not necessarily close where I can just zip over and see her.
My Kaiser facility is literally down the street from me and it's easier to get there when not feeling 100% than to make the 45 minute drive to my rheumy. That is the only drawback to her awesomeness ... she's that far away!
I'm keeping a journal of things and will run it by my pulmonologist or GP, whomever I can get to see!

[Wegetarian]

I plan on going through some boxes of books (I can do that sitting down!) and sorting stuff to be shelved and others to be given away.
I have just under 4 hours of work left. My head hurts, my face hurts, and sometimes it feels like I'm going to hurl but I'm not nauseous?
Ugh. Why?

Is it really a good idea to be such a trooper when you are feeling bad? I mean I couldn't get sleep last night and as I expected I felt pretty bad this morning as a result. I'm just going to be in bed until I feel better. Well, I'll go and do one errand and maybe go for lunch with a good buddy but otherwise its just resting for me - and I'm not even feeling all too bad.

Take care and promise us you'll rest enough!

[NikkiNicole]

I will. I have a list of things I need to get done (we moved in mid-May but have both been working) but ... I know I don't HAVE to get them done all at once. Just one lil thing at a time if I can. Or, nothing at all. It will all depend on what tomorrow holds.
I can't wait for my head to hit the pillow in just over 2 hours. But, who's counting?!

[Auntie TooToo]

Know that you are not alone in this journey! I too had a difficult night last night ~ up until approximately 2:30 am only to wake back up about 4:45 am. Oh well, guess just in time to take a long hot shower, get a piece of toast and start my daily regime of medication. I so relate to the respiratory problems [i.e., sob] as I am some pretty serious lung involvement which is making treating my case of WG's high-risk as pertains to medication precautions. Last night, my joints [specifically lower extermities] would not quite aching and muscles just pulsating; felt similar to charlie horse at times with pain radiating down one leg :crying:. Haven't been to work since last week [wednesday] and not sure when this flare will pass; still waiting on pulmonary to get ct chest approved/scheduled so we can determine what is going on for sure right now.

Sending loving concern for all my fellow warriors and hoping we all have a better day than yesterday ......

[annekat]

Nikki, when you cough, does anything eventually come up, and does that help the cough? With me, and others on here, it can be stuff dripping down from your sinuses and collecting in your bronchial tubes, which are narrow, so it can take awhile to cough the stuff out of there. I remember when I was sicker, I had a lot more problem with this and often had trouble breathing until the cough was productive. Now, when I find myself coughing more than usual, and when there is more nose-running, it usually means there is old mucus built up in my nasal cavity and sinus openings that needs to be loosened up and flushed out with multiple NeilMed rinses. But I know every case is different, and I hope what is going on with you is not more serious than this. The dizzy spells and heat and chills do not go along with this for me. I hope you will feel better after 3 days off and some significant rest.

[Alysia]

Hi Nikki,
do you have fever ? (I'm always carring with me thermometer, to check fever)
listen to your body. It is one of the most important things to do when you are a weggie.
take care :hug2:

[Wegetarian]

I'm always carring with me thermometer, to check fever

Do you often get a fever? I'm really anal about measuring my temperature when I'm ill. Its actually a pet peeve of mine :cool1: I even bought this really expensive thermometer once (they used the same at a hospital where I was). I'm kind of curious since I notice I reacted to playing a high intense game, in 45 minutes of playing my body temperature went up from 36.0 to 36.7 and I felt exhausted. Did decide I would quit if for now, since I don't think it can be good for me. Was just surprised I reacted so strongly, had no issues before I got ill. Atlthough my physical shape is also very poor now.

[Debbie C]

Nikki,the stuff you are going thru from your move,boxes,books and things. Are they dusty or mildewy ? I know I have been having a terrible time,I have been going thru things I have had in my basement for 10 or more years and the mildew and must is literally killing me. My sinuses are draining in my throat and just coughing up like spit and my nose hurts so bad I can't even put my glasses on to read. So make sure after you are done to take a nice long shower to get all that crud off you and lay back and relax. If you don't feel better go to the e.r. ,they can reach all your drs. You have 3 days off so don't push yourself,that other stuff can wait,your health is more important.

[Auntie TooToo]

Yes Nikki ... I agree with Alysia totally! I deal with similar symptoms as you mentioned and this cough just never seems to go away with all the sinus & lung involvement that I have. And FEVER ... I constantly run low grade fever's and for someone with very hypoactive thyroid issues with baseline temp ranging from 96/97, it doesn't take much to make me feel like I'm burning up! My team actually has me keeping daily journal of vitals and symptoms to assist them in managing WG along with all other involvement. It helps me also during appointment with this prednisone "brain fog" to not forget any little thing that might be important to their treating ~ I think it's a good idea for anyone dealing with such disease because sometimes [at least i do] get overwhelmed with all of this. I agree with Nikki and am trying to apply to myself ..... listen to my [your] body! :biggrin1:

[Alysia]

Do you often get a fever? I'm really anal about measuring my temperature when I'm ill. Its actually a pet peeve of mine :cool1: I even bought this really expensive thermometer once (they used the same at a hospital where I was).

I'm checking my temprature in my armpit. my doc adviced me to check it whenever I'm not feeling well. above the normal temprature might be a signal to flare/ flu/ infection etc. being vigilant is necessary when you are a weggie.

[mishb]

I'm checking my temprature in my armpit. my doc adviced me to check it whenever I'm not feeling well. above the normal temprature might be a signal to flare/ flu/ infection etc. being vigilant is necessary when you are a weggie.


For the entire 4 years that I have had WG, I can't say that I have ever checked my temperature.

It was checked when I was in hospital in 2011 but never at any appointments - ever......or by me.

I was told to check my blood pressure weekly and also my blood sugar - and I have monitors for home use, for both of these.

[Auntie TooToo]

Same here .... my rheumy has me keeping daily track of temp, blood sugar & pressure and daily journal of symptoms. Since this journey began, there is pretty much not a day goes by that I don't run a low grade fever off/on throughout the day.

[annekat]

I haven't had much in the way of fevers, and when I do check my temperature, it is usually below normal. I wonder what that means. I had a conversation with our old friend, the late Al, who told me he had the same thing and I don't remember him having a reason. both of us had typical temps around 96.7- 97.6, if I remember right. The only times I've a temp above normal was during my initial big flare and during my later minor flare, but in neither case was it alarmingly high. Maybe I should measure it now, but don't have a thermometer handy at the moment.

[Auntie TooToo]

It's really amazing how our stories are so similar and yet different at the same time. My issues pertaining to temp are two-fold as I am very hypothyroid and have been since a teenager. My normal temp ranges anywhere from 96.3 to 97.3 and these days with the WG & associated lung involvement, like I said I run low grade alot of the time [hoping once I attain remission that too shall pass]. When your used to such a low normal, when I hit anything above 98.8 which is a normal persons normal, I feel like I'm feverish! I can always feel it ... Past Sunday morning when I was woke up in the wee hours, that is what actually woke me up as I was so hot and feverish; when I checked temp is was at 99.9 which for me is really fever.

[drz]

Checking our body temperature can be important in checking for infections that could cause a flare or at least an increase in our residual symptoms. Chills or heavy sweating can happen early on in treatment from all the meds we take but infetions can be serious and need to caught early given our broken immune systems and vulnerability to infections.

[NikkiNicole]

Wow, I need to be better about not falling off the face of the earth on my days off!!
Thank you for all your wonderful information. I had a wonderful weekend. I did not do anything that I was supposed to be doing. Quite literally anything. We ate out far too much, had a "Welcome" breakfast with all our neighbors, went swimming and just relaxed most of the weekend.
Unfortunately, hubby is fighting a bug so ... I have to be extra careful not to catch it!
I overdid it enjoying myself yet mentally I feel better than I have in awhile so it was much needed. Physically ... I don't feel any worse, which is good, despite missing my sinus rinse this morning and being unable to touch my nose, which itches badly ....
I usually run a low temp, and I know instantly when it's up. Those fever symptoms are hard to miss. I had a bit of one off and on ... but nothing that knocked me off my feet. Thankfully, between being away from home, hubby just wanted to relax on the couch so I never had to ask for us to stop and slow down.
I only work today (14 hours), half of tomorrow, and a regular 10 hour day Tuesday and then I'm off for 4 days!!!
I wish I was off these days too.
I hope all of you are doing well.

[Debbie C]

Wow Michelle, I can't believe the dr. office doesn't check your temp. That is just routine here along with checking bllod pressure and pulse ...I guess you need to go buy a thermometer ! I get hot flashes like before with pms and check my temp and it's normal so I don't know what that 's all about unless this is another "change" I'm going thru !!

Nikki.glad you had a good weekend,hope your hubby gets to feeling better. My boyfriend and I got away for the evening and the hotel gave a a complementary bottle of champagne. I was up half the night and most of Sunday with a headache. But at least getting away was nice.Now tomorrow I have to get my Jeep fixed,the starter went out on it. Always something

[NikkiNicole]

Champagne sounds lovely. My Rheumy told me alcohol was an absolute no-no on my medications so I've given all my wine to a friend of mine. I had certain bottles that I loved that hubby could care less about so I took it out of the house. We live in Wine Country and are members of a couple wine clubs for our favorite wineries. At least we modified one to send just what hubby likes.
I am trying not to miss it but I loved a glass of wine with our dinner on "date night". It made me feel like a grown up because so much of the time I act like a complete child.

[Debbie C]

All my drs. said a glass or two at dinner is fine. I love wine also and still do have a glass with dinner on occasion. I also had a couple of Michelob Ultras so maybe the combo gave me such a bad headache. I just can't handle it like I used too.


Is your dog a corgi. I used to have one that looked just like that except he was just brown and white. He was one of my favorite dogs,had him for about 12 years and I swear my ex- mother-n-law poisoned him.

[NikkiNicole]

Why yes, Debra! My doggie is a Corgi. He just turned 16 months old today! He is quite simply the greatest friend I have ever had. He is quite the little assistance dog without the training!! He stays right by me when I am sad/sick/upset/angry. He follows me everywhere and hubby is always upset because he let's him out of his crate and he comes running to me, bypassing hubby completely. But then will run back and give him kisses as well.
I wish he could come to work with me. I could so use a puppy snuggle right now.

I've just sworn off the alcohol to make sure everything goes OK. It's easier to keep track and hubby enjoys having his permanent designated driver back!