There's a storm coming ....

[NikkiNicole]

I feel like there is a storm brewing in my body. I don't know what else to call it. Every day, something is worse. Not like gigantic leaps in a bad direction, but just a step worse than the day before.
Last night, I had an itch on my nose and rubbed it just a little, cracking open a dry spot at the very tip. I could see where the blood was coming from. I grabbed a tissue, and held it to the tip of my nose while I went about my business. I never tilted my head back or pinched or any of those things. A little while later, I tried to clear my throat and back of my nose (the only way tto describe this is like someone hocking a wad a spit ... ) and something went into my throat and made me cough. I ran over and spit into the sink and spit out lots of loose blood and ... a huge bright red, bloody, hunk of something. Maybe it was blood soaked thick phlegm, I'm not sure. But it definitely had texture to it. Yes, I touched it. Because I'd never seen anything like it.
I brushed it off saying it must have been the thing wedged up in my nose in the back that was keeping me from breathing well. But, hubby pointed out that it wouldn't be bright red like fresh blood.
Today, the left side of my face is SO tender. My left cheek, the eye lid both top and bottom, my throat hurts and burns, etc. I am coughing and my lungs sound bronchitis-y, and I keep sneezing. The spot on my leg is now painful.
I will be seeing the doctor tomorrow. Well, a nurse ... but ... someone.
In the meantime, I want to cry. :sad:

[annekat]

Nikki, I'm so sorry. When you see the nurse tomorrow, maybe she will be able to get you in to see the doctor. I don't understand these weird, always worsening symptoms with you and others on here who have good doctors and are getting good care. I know that Wegs is different for everyone. But I don't even have a doctor with any Wegs experience worth mentioning, and he spends very little time with me, and all of my extreme symptoms disappeared with treatment early on and didn't come back, except for a minor flare I had which responded well and predictably to increased dosages of meds. I just feel so lucky that I am feeling so good now, at my age, with the level of stress I have in keeping my head above water financially as a self employed person selling a craft to make ends meet, in addition to my small disability check. I guess it is still early on for you and I know your full time job is a stressful one. I guess that could be a reason for your issues that don't seem to go away. I just hope that something can change soon and you will feel a lot better. Go ahead and cry if you can; it might be therapeutic.

[Barbara N]

I feel like there is a storm brewing in my body. I don't know what else to call it. Every day, something is worse. Not like gigantic leaps in a bad direction, but just a step worse than the day before.
Last night, I had an itch on my nose and rubbed it just a little, cracking open a dry spot at the very tip. I could see where the blood was coming from. I grabbed a tissue, and held it to the tip of my nose while I went about my business. I never tilted my head back or pinched or any of those things. A little while later, I tried to clear my throat and back of my nose (the only way tto describe this is like someone hocking a wad a spit ... ) and something went into my throat and made me cough. I ran over and spit into the sink and spit out lots of loose blood and ... a huge bright red, bloody, hunk of something. Maybe it was blood soaked thick phlegm, I'm not sure. But it definitely had texture to it. Yes, I touched it. Because I'd never seen anything like it.
I brushed it off saying it must have been the thing wedged up in my nose in the back that was keeping me from breathing well. But, hubby pointed out that it wouldn't be bright red like fresh blood.
Today, the left side of my face is SO tender. My left cheek, the eye lid both top and bottom, my throat hurts and burns, etc. I am coughing and my lungs sound bronchitis-y, and I keep sneezing. The spot on my leg is now painful.
I will be seeing the doctor tomorrow. Well, a nurse ... but ... someone.
In the meantime, I want to cry. :sad:

My heart goes out to you. It sounds awful. I hope it turns out to be something simple that they can fix or was just a clot that needed to be removed and you removed it. I haven't had those horrible clots and crusting for a few year now but <i remember trying so hard to remove them from my nose that one time I actually pushed my septum out of place. You can get really desperate. I hope this passes soon and you feel better. Barbara

[drz]

I want to echo above sentiments. Red blood means you are bleeding and that is not a good thing. Usually something needs to be addressed.

It is tough when you feel too sick to do much but no one thinks you are sick enough to be in a hospital. Days are long then and a good cry can be helpful.

[pberggren1]

Nikki, you really need to go see Sharon in San Fransisco.

[rebekah]

Oh Nikki, I’m sorry to hear this. Like drz says, blood usually means something is wrong. I hope that you can get in to see a doctor asap. I know I don’t always see a doctor when I cough up blood, but as they say doctors make the worst patients. I know that’s not an excuse though. I hope you feel better soon. Sending a big hug your way!

[Alysia]

Hi Nikki,
your suffering is too long and too much :sad:.
I think you should see your doc asap, and get some answers from her: what does it mean - that "piece" that went out of you ? are your lungs/ throat also involved ? how long it takes to the injected mtx to start working ? maybe mtx is not "your drug" and you should try another one ? how much pred you should take to calm down this state ? she must take total responsibility and do whatever she can, and not rest untill you can start feeling better.
I am sending you my love and my praying :hug2:

[NikkiNicole]

You are all so wonderful to me. I went back and forth about calling in sick to work today because I woke up feeling very "off". I pushed through, went grocery shopping, made dinner and packed my lunch. It was important that I do those things because I need to get my diet back on track. I'd worked WAY too many back to back shifts that left me just grabbing stuff on the way in and it wasn't good choices.
I went and learned how to do my injections today. Wow. Completely painless.
My doc ordered new labs, and a new chest x-ray but I will have to do those tomorrow. Part of me wants to wait and see if the injected MTX works and do the labs at the end of the week. I will see how I feel.
The side effects of the MTX came on much quicker with the injection. No nausea though! YAY! My head feels full, and I feel kind of dizzy. Not enough to send me home though.
My doctor and I talk daily, and she will fit me in at a moment's notice if needed.

[mishb]

Hi Nikki,

I hope today brings you less pain and less problems.

Did you manage to get some sleep? I guess all of this worrying/stressing about every new issue, is not helping :crying:

Have been thinking of you and I hope you get some answers today

[mishb]

See how much I have been thinking of you - we must have both been typing together :thumbsup:

I'm glad some things were sorted out for you and I hope you start feeling a little (or a lot) better

[annekat]

Nikki, I'm glad to hear that about your doc, that you talk daily and she can always fit you in. That is a far cry from the relationship I have with my doc, although I think if I was having a crisis, he would fit me in... And I know you said your doc is a friend of Sharon Chung at UCSF and can always ask her questions. Knowing those things makes me feel a lot better. Sounds like the injected MTX may be a good way to go... no nausea! You'll probably get over the dizziness with time. A part of me wonders if you need something stronger, but I'm sure your doc has thought of all that. I don't know how you do all you do and work, too, with the way you feel. Maybe your relatively young age helps with that.

[NikkiNicole]

The injected MTX is on a trial basis for now. I didn't see any improvement in her eyes on the pills. We didn't go up to 25MG of the MTX in pills because she felt it would be "delaying the inevitable" and would have had to switch to injections anyway. So, we switched at 20mg and if there is no marked improvement, I can go up to 25mg ... and then we'll look at something else if THAT doesn't work.
I have to say, I am over the moon that the injection was completely easy to do. Now, if only I can feel better. Someday ... someday I will.

[annekat]

I have a hard time imagining injecting myself with anything, but I'm sure it must not be that bad. I'm glad you are finding it to be so easy!

[Debbie C]

Nikki, I too feel so bad for you, you just don't seem to get a break ! I hope you went and got your labs done.Maybe you are having sinus involvement..you should compare what you spit out with the pics on the other post !!! I sure hope your doc comes up with some answers soon. I still think you need to a some kind a leave from work so you can stay home and relax,you just have to much going on right now and you are not getting any better.:hug2:

[woz]

Hi Nikki, its good to know that your doctor is looking after you, and you are in constant contact with her, as we all know some people respond quickly, and others take a while to get on top of it. I am sure it will start to turn around for you soon, if not I would seek alternative medical advise, a second opinion wouldn't hurt.

We'"ll be friends till we are old and senile.........then we'll be new friends!!!!!!!!

Regards woz.

[drz]

I have a hard time imagining injecting myself with anything, but I'm sure it must not be that bad. I'm glad you are finding it to be so easy!
Anne
You could do it too if you had to do it. I learned how to give myself injections several times daily when I used insulin pens and syringes four or five times a day plus 10 finger sticks to check my blood glucose levels. I do find the insulin pump much easier though than the multiple injections and having a continuous glucose monitor also reduced my number of daily finger sticks.

Do you get a beautiful change in fall colors on your trees in your area?

[annekat]

Anne
You could do it too if you had to do it. I learned how to give myself injections several times daily when I used insulin pens and syringes four or five times a day plus 10 finger sticks to check my blood glucose levels. I do find the insulin pump much easier though than the multiple injections and having a continuous glucose monitor also reduced my number of daily finger sticks.

Do you get a beautiful change in fall colors on your trees in your area? I'm sure I could, drz, if I had to. My mom had to for awhile when she became diabetic temporarily from taking pred for pneumonia and respiratory problems.

As for the trees and fall colors, yes there is some, but not nearly as striking as in places like New England. The most striking red colors are on ornamental trees that are planted in landscaping. In the native habitat, the big leaf maple is the most prominent tree that changes color, and it becomes a mustard yellow. The size of the leaves on the ground can be quite impressive. To me, the dark green fir trees with the yellow maples mixed in among them makes a beautiful landscape that is restful to look at. Since we have to have fall and the coming of winter, might as well find some beauty in it, although this can be a difficult time for me.

[Dirty Don]

Sorry fall is not good for you Anne, but it RAINS there...enjoy your colors as they will be swilling around on the ground soon if not already! LOL, just giving you a bad time cuz I can as I'm from the NW too! LOL! Hang tough sister! BTW, I just planted 2 new mini palms, some color spots around the fountain, and it's so nice at night the doors and windows are open! It's spring here...again...we get 2 springs a year here...gives me a chance to rejuvenate my one rose tree from Oregon that I brought here to see if it would grow...roses are hearty plants, love'em!

[annekat]

Thanks, Don... Arizona sounds pretty nice in many ways.

[Debbie C]

Don ,I was going to "unlike" you but there is no button for that. I hope you enjoy your palms when we are shoveling snow !!!!

[NikkiNicole]

I don't get snow here ... but I am excited and can't wait for rain!!!!

[annekat]

I don't get snow here ... but I am excited and can't wait for rain!!!! Yes, rain can really clean things up and make everything fresh, after a long time without it. We have gotten more than our fair share in the last week or so, though. Today, we're back to fog followed by probable sun, sort of like the California coast. But not quite as warm.

I hope you are feeling better, Nikki, and have gotten some possible answers from your doc.