Jump to content

I'm still hanging on...exhausted but hanging on


Recommended Posts

Hello everyone--I've been keeping up with reading the forum, but not able to post as much as I'd like. First off, welcome to the many new members who've joined in the past several weeks. I'm amazed sometimes at the number of new posts here daily.

So, here's what's going on. My sinus infection has returned and layed me out for the weekend. I'm on antibiotics. Again.

Last week I saw my gyn who still wants to take out my ovaries to help with my abdominal pain and migraines. I declined again. I also saw my neurologist who doesn't really have anything else he can do for me excepting migraine meds. I also saw an orthopedic surgeon familiar with EDS--he reviewed all my films and took some new ones, and reviewed my history. My fusion looks beautiful and is well integrated (meaning the bone healed well) into the surrounding bone. Also, the spinal canal looks open and no csf flow restriction. That's good news. However, he felt I could benefit from PT to help me build stamina and to help stabilize my loosey-goosey joints.

So, that lead me the Ortho referring me to his partner who has 3 MD's--excercise physiology, internal medicine and anesthesia/pain management. Can you say overacheiver!?? I saw him on Friday--and he felt that in order to improve my quality of life I'll probably need physical therapy for the long haul. He wrote me a very specific prescription and I have my first PT appt today at 3pm (the script says "no traction", focus on seated & prone exercise and walking). He also told me that I have quite a bit of arthritis in my spine--not a surprise to me given the pain.

Other stuff--grad school is very challenging this term. I have an exam in that class tomorrow night and I've been struggling with the brain fog and short attention span. I also had a midterm last week, which I think I got at least a B grade on. I'll find out on Weds.

Work has been very stressful and taking a toll on my health--mostly emotional stress because I've had to sit in on meetings with staff who were being reprimanded. You all know how that goes with high emotions and the crash that then follows. I'm good at keeping a calm exterior but I hate having to do those tough meetings---they leave me so drained. I think that gave my sinuses the opportunity to creep back up to make me sick again.

I caught up on shipping DINET bracelets last night :rolleyes: Some good news too--the bracelets that are being sold by a Croatian shop online are now listed in their website. I, of course, had to send links to them to everyone in my family :D I needed that little boost. I'm hoping they don't sell TOO well b/c I don't have any energy right now to make more.

Link to comment
Share on other sites

Guest Mary from OH


Bless your heart!! You're still plugging and chugging though!! That's just what we have to do!! Nice to see you post!! Actually, I have a funny question to ask you though!! Basically I know a lot about you from being on the board for about a year, etc. Know you're a Type A personality like me, a Psych person like me, a fellow dysautonomiac like me, a migraineur like me.... and Iwas wondering, are you by chance an Aries?? Your personality seems to suit it!!!! Just wondering!!

Take care of yourself, never give up, but.... KNOW WHEN TO TAKE A BREAK!! (yes, I know it's the pot calling the kettle black, but, shhhhh just take the advice and "be a good little mousie")

Love you!

PS - I feel lousy too! I have bronchitis and just slept from 9:30 to 3:00 for a little nap because I was so tired and seeing double etc.... I think I'm going in for a BIG POTS spell here!! I did this about 8 years ago and I'm scared!

Link to comment
Share on other sites


Hope you feel better soon. I don't know HOW you do all you do.

and I don't know how anybody reads all the messages here for moderating. Gosh, I never read all the postings as this place is busy. thanks for the moderating thing you do on TOP of all your other commitments.

Good luck with the sinus junk.

Hey, can sinuses be drained (which has to be painful) or have you ever read the theory that bacteria doesn't necessarily cause sinuses to become impacted. It can be viral or just bad drainage.

I only ask this because you seem to fight the sinus thing so often. I can't imagine ingesting all those antibiotics as I believe they mess with the ANS big time.

Double your vitamins!!

Hey, I wish they still made REAL HOT HORSERADISH. The heat from horseradish RISES thru the sinuses as opposed to mexican heat that just takes off the top layer of the tongue. Thor used to make a great hot horseradish but it's not around anymore. I asked a Jewish friend over Passover and his 87 year old mom said they don't make HOT version anymore. She is right. I have tried all the "hot label" brands and they are not full of heat. I used to love that stuff for loosening sinuses. It's not availabe in Ohio even at the Jewish Deli's. Making your own is dangerous business from the fumes of the root. Just wondered if that stuff ever helped you.

But anyway, when my sinuses feel tight, I CRAVE hot horseradish in a cocktail sauce like used for shrimp, lol.

Good luck.

Link to comment
Share on other sites

I love horseradish...and anything hot. Actually, there's a horseradish topping factory, kelchners, just a little ways from here... :angry: Yes, they still make hot stuff... and, I can get hren (huh-ren) which is a Croatian version. Also, there is an asian market where I can get fresh root. I also like to eat at a Vietnamese restaurant in philly--they make a broth that clears my sinuses like nothing else. I felt too cruddy today to go there--still had a temp this am.

I have had my sinuses drained several times. Ugh. I've also had surgery to open the drainage. I think my infections may start out as fungal, but then the bacteria get in on all the fun too. There's not much left to do. I use a saline rinse system which I also sanitize between infections and/or get a new kit. When my ears and sinuses get really bad, like they are now, i can't rinse because water gets trapped and causes excruciating pain in my ears.

I don't know how I do what I do...sometimes it's a blessing and other times it's my undoing. I don't really know how to relax other than sleeping. Meditating helps a bit, but my brain is always "on". Exercise used to be my only outlet--my thinking would slow down, I would get into a rythmn and just keep, literally, plugging on.

PT was good--I'm going to be sore tomorrow. My stability in my trunk/abs stinks! I was working mostly on a therapy ball, on my back and only about 3 or 4 minutes of standing. The PT and I discussed that the doctor said "no standing" because of my fainting history, but we both (PT and I) agreed that my real life involves standing so we need to mix it up and alternate with small times of standing. I told him my goal to run a road race. I believe if anyone can help me get there, this guy can. I go again on Friday. In the mean time, I have daily exercises to do at home on my own therapy ball (I already own one).

Corina, I'll send you a private link. I'm actually thinking of opening my own online store--my sister has tons of business for me in the form of "mother's bracelets". I made hers, and she gets tons of questions about where to get one. It is so flattering and also a bit nice to think that I have other options than my current career if I need to stop being a behavior analyst; I hope never to need to do so.

Also, I re-read my original post above--I'm so disjointed--I meant to say that I'm taking two classes again this term, and had one mid term last week and another tomorrow. I have a paper to do that is left over from my Summer courses.

Link to comment
Share on other sites


that hot horseradish..is it PURE horseradish?

And, for my jewish friend, is it Kosher AND or Kosher for Passover?

If so, could you sell that on your bracelet site, too? LOL.

Dang, that must be such a nightmare that sinus thing...I had my first sinus infection about 4 years ago after my FIRST COLD in 20 plus years...ears hurt and sense of smell gone and sinuses on exray were packed in the max ones...I think..the ones on both sides of the nose.

BUT since the infection, I often wonder if I don't get mini versions.

I have searched the Internet for hot horseradish and haven't trusted the names I find to truly be "hot" version. Many say it but upon taste, are bogus.

. If that placed by you is Kosher and does mail order, I know of a few people who may be interested! Especially for the holiday season. My mom makes a kicka** Shrimp cocktail IF she has the proper horsey sauce! Feel better.

Hope you get relief soon.


P.S. YIKES! Just checking, it was my maxi sinuses and just read they can cause teeth pain and pain in jaw sending people to the dentist. PUHLEASE! I hate the ENT jerks I went to.

I need to try another endeavor to find hot horseradish and then take a shower afterwards...if only we could handle sauna's...i could do a eucalyptus thing and get rid of my recent sinus headache and pressure. I am beginning to think my sinuses headache of the intermittent kind aren't an infection.

Nina, is there such a thing as a chronic mild infection? Don't answer until you feel like it. YOu have enough going on but I even slept with my bit splint last night due to multiple tooth aches..I DO grind my teeth so when is it the grinding and when is it the sinuses?

Which came first, chicken or the egg...the wind or the sand!?!?

I hate idiots who make their PS as long, or longer than the original message.


Link to comment
Share on other sites

Hi, Nina. I hope your sinus infection clears up soon. Gosh, you are doing so much, and battling med illness and the medical community at the same time!! How do you do it? You're an inspiration. I really would love to go back to work and graduate school, but don't see how I could right now. I can relate to your migraine issues. I am STILL waiting on my primary to refer me to a neuro. I'm sorry yours didn't have much help to offer you.

Take care and don't push too hard!!


Link to comment
Share on other sites


I really hope you begin to feel better.

You are so inspiring - you are involved in so much!

Let us know how your tests go,


Link to comment
Share on other sites

Hi again.

I'm thinking of calling out for tomorrow, as I did today. I needed the rest. However, I was too tired to make dinner and Teri was wiped too, so we were naughty and got pizza. Not gluten free :( I know. I'm totally naughty as my tummy has been telling me.

The tightness is setting in from the workout today--and I'm thanking goodness for my pain management doctor giving me oxycontin. If it's bugging me before I go to bed, I know that it will be screaming once I lie down an my brain quiets down...then the pain is the only voice left.

Thanks everyone. I'm to finish my studying for tonight and head to bed.

Link to comment
Share on other sites

wow nina.. i really hope that you start feeling better soon... you havent been feeling up to par for some time now...

Is the any way that you could maybe take some vacation time from work or some kind of short medical leave for a wek or so?? to give your body alittle bit of recoop time?

I hope that you pain meds help you tonight and that you are feeling better soon Nina..

hang in there.. its good to see you the boards tonight!! :(

Link to comment
Share on other sites

OMG my midterm was so hard tonight...I wrote until the last minute...three hours.... consoled myself with chocolate in the car and topped it off with left-over pizza when I got home. I'm going to be having the runs later for sure.

Also had a heck of a day at work. I'm so completely overtired and sore. Just wanted to check in.


Link to comment
Share on other sites

Nina, That exam sounds exhausting! I used to have so much trouble finishing when I knew what I wanted to say but my hand was too tired to continue. Chocolate sounds like a super reward! With the antibiotic are you taking pro-biotics? You probably are, but I thought I would just add that. I had trouble with them in the past, but my doctor has me taking a kind that I dissolve in fruit juice! I take it twice a day, and it goes down easily with no taste. My body isn't getting as sick from food since I have been doing this.

Feel better soon!

Link to comment
Share on other sites


You sound like you are suffering so much. I've been hospitalized with sinus infections in the past and I know how terrible someone can feel. I hope that you can pull all your stretched parts together and huddle under a blanket and get better.

To clean out sinuses here's what I've done and I've never had a severe infection since I started doing this when one takes hold. I mix up some saline and put it in a dropper or the smallest bottle. The water should taste pretty salty. Lie down. You can put it in your nostrils now or you can spray a 12 hour decongestant first.

After each spray or drops, roll, back and forth, hang your head over (hear the wind blow :rolleyes: )

If you can tolerate the decongestant, it will shrink those tissues and the saline will liquefy and wash out the matter that's filling up your head. It is unpleasant to feel the extra liquids in your sinus but doing this can bring great relief.

Nina, I hope you can sleep so your body can get better. -Deb

Link to comment
Share on other sites

I could just scream right now. I got my exam back from last week--I studied well and thought I did pretty nicely....

I got the lowest grade I've ever gotten in graduate school...ever. I don't know what to think; I normally ace essay exams, but I apparently didn't give enough detail in each of my responses (which my other professors hate). Live and learn, I suppose, but I'm frustrated... maybe my brain fog and constant tiredness is sucking away my brain's ability to do the things it used to do.

I'm getting tired of being exhausted, sore, and having my wicked headache that's been going with whatever has my sinuses all gunked up. (btw, I do use a rinse system, but it's not supposed to be used when one has an accute infection)

Wow I sound so cranky lately. Harumph. Nina

Link to comment
Share on other sites

just wanted to send some (((HUGS))) your way...wish i could do more.

i'm "getting" where you're at right now more than i'd like to be at the moment but won't hijack your thread too much...struggling school-wise, back on antibiotics, etc...when i said to myself that "if nina can do it so can i" i didn't know you were planning on such a rough start to the year :) you should have warned me! ( i hope you know i'm saying that with all the best admiration & smiles)

hang in there...

:blink: melissa

Link to comment
Share on other sites

Nina, I am so sorry! I had a 4.0 in graduate school but FAILED my comprehensive final.

It was multiple choice and essay and I FAILED both parts. It was one of the worst experiences of my life. But, there is a part of me that thinks maybe my cognitive skills were declining more than I wanted to admit. I retook and passed but it shocked the **** out of everyone, especially my professors that I of all people FAILED both parts of the final. So.... I understand your pain. It was devastating. On the flip side, the sun still rose the next day. The earth still turned. I didn't think it would but it did. Take a hot bubble bath and pour yourself your beverage of choice. We all are on your side and know that you are going to succeed.


Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Create New...