Good 3 Mornings

Mornings have been good again 🙂 I get at least an hour of "barely there" pain, which is really nice. Once I start moving in the morning though, body pain settles in after a bit of a delayed reaction that I am thankful for!

Bladder pain has faded to a dull pain as well. The past three days have been fairly consistent. Not so much fog in my brain, brain fog makes me feel like I am going crazy. I cannot hold onto a thought more than a second, and I cannot be in charge of anything important. It's scary.

 I have been able to make it down the hall to the Zen room and get on my desktop for the past three days! I have not physically gotten accomplishments done that I Want to get done(I know, everytime I Feel just a tad bit better I jump ahead of myself and want to do more when I should not push myself). I have accomplished getting in the shower everyday! My body feels very laggy, the message from brain to everywhere is super slow and unreliable.

After 4:30 is when things get weird.

I am so worn out physically and mentally just by being awake. Spasms, twitches, pain, numbness, loss of eyesight, bouts of crying.... After 4:30 is not fun. And this is just from "gentle"stimuli inside my own house. If I have to go somewhere it gets a lot worse a lot sooner. Can't handle the outside world!

Urologist Visit

So...
Went to my Urologist appointment two days ago with Dr. Corinna Jewell with Urology Nevada. She is super nice and very knowledgeable.

My bladder Symptoms per my own personal research pointed to Interstitial Cystitis. I gave Dr. Jewell a printed timeline of bladder issues and she said it very much sounds like IC (Interstitial Cystitis).

IC is unfortunately uncureable. It is also a chronic condition that can flare up. (Last time this happened was 12 yrs ago same song and dance). The only way to know for sure is to go in and look!

So, appt in over a month for that.

Plan of action!

- Samples of Vesicare: For Bladder pain
- phenazopyridine: For numbing bladder
- Nitrofurantoin Macro: Antibiotic so I do not get another infection due to low immune system
- Zyrtec: this actually helps spasms in the bladdder.
- Drink more water even though it hurts!
- I have a 3 day pee diary, intake and out take
- Made appt. with dr. Good for an endoscope bladder look thing.

Not so Bad

Yesterday was very painful... Today is a slight bit better.
Only one dose of AZO this morning and I am still doing okay this evening. Granted I took a Dillaudid pain pill earlier too. I think it is all wearing off.

It was wonderful to not have much pain, I took advantage of it and picked some laundry up in my bedroom, whatever I could reach from sitting on the bed. Took a long shower and fell asleep after sitting in bed. That quick of fatigue caught me by surprise. This happened yesterday as well, fell asleep for a few hours very suddenly.

Bladder pain is bearable! 👍

Bladder Issues summarized

WHOLE lotta pain yesterday, today.

Making a timeline of Bladder/Urinary Tract infections and pain since my 2 week hospital visit for a Multiple Sclerosis exasperation in July. Will be seeing a Urologist Monday so trying to be organized!

July 23rd - Released from Hospital with Foley attached, Foley because I was unable to pee (MS thing) Foley in for 10 days.

July 25th - Bladder and Foley hurting, made primary appt.

July 26th - Saw Primary Care. They took Foley out, tested pee pos. For nasty infection. Gave me two shots of booster antiobiotics in the butt, and cipro 10 day antibiotics.

- Cipro helped, felt good for a while

Aug 12th - Bladder/ UT pain is back got another refill 10 day Cipro, but Cipro not helping. Made another primary appt.

Aug. 18th - Saw Primary Care. Peed in a cup. Positive for infection. Two shots in butt and new antibiotic Nitrofuratoin Macro. Doc said this antibiotic has more oomph since I have a low immune system. Doc said if not better by next evening to go to the E.R as this could turn into sepsis fast. Also the prednisone I am taking will mask symptoms of infection like fever. Referral sent to urologist.

Aug. 19th - Bladder pain much worse, very intense. Went to E.R at Renown hospital. Pee tested 0 for infection, abdomen was x-rayed due to intense pain. No bowel obstructions. Pain meds and zofran in I.V and sent me home.

- Suffered a few days in bed intense localized pain. Things got a little better over the days.

Aug 31st - Bright red pee in middle of night, Bladder and UT pain has returned. Set up appt with primary care.

Sept 9th - primary care visit. Peed in a cup tested 0 for infection. But test indicated a lot of inflammation. Another referral was sent to urologist as this was out of their league. Bladder was on FIRE and I was very nauseated. Was given a new antibiotic Cefdinir.

Sept 12th - Feeling a little better.

Sept 15th - Bladder pain is back! Bright red pee and pain.

Sept 16th - Primary care follow up visit. Pee test 0 for infection but again pos. For inflammation. Her guess is Intercistial Cystitis? Sent referral to Urologist AGAIN. Told her I am going to take AZO pills as the pain is horrible and AZO helps (numbs the bladder).

Sept 21st and 22nd - In bed with heat all day. Bladder and UT pain is intense. Forced to take Dillaudid along with AZO for crying pain. Just waiting for Monday.......

Primary Care Visit

Visit with my Primary Care on the 16th.
This was a follow-up to my visit of suspected ongoing UT and Bladder infection on the 9th (I think).
Was supposed to get a call from the Urologist referral. (Didn't)

Morning of the visit I had bright red pee and intense bladder pain. I literally took a pic of my toilet to prove it, but I will spare you that image.

Peed in a cup, negative for infection, positive for inflammation. Primary care nurse practitioner Annie  was at a loss since this was weird and out of their league. They had been trying to get me a Urologist for over a month. SOMETHING is going on in there for sure. Antibiotics have little affect.

- Peeing hurts
- Pressing on my bladder hurts
 - Full bladder really hurts
- Pain is localized (back does not hurt etc.)

I asked nurse Annie that if she had to guess, what might be going on? She said if she had to guess it would be (something) cystitis i would have to look up the term she used. I told her the AZO pills over the counter really helped (they numb the bladder and UT) which tells her it really IS the bladder etc. But I need really do need a Urologist, as this is weird. I also got my written prescription for Lyrica! Hopefully now I can get the ball rolling with the manufacturer in hopes of free or low cost meds.

So from that visit I got:

- Referral to Dr. Kreiss the Neuro (again)
- Referral to a Urologist (again)
- Written prescription for Lyrica (Needed to Apply to manufacturer)
- Appointment To talk about pain management

Urologist called! I have an appt on Sept. 26th at 8:30
Hopefully I can wait that long.... 7 more days.

Neurologist No Go

Unfortunately I was unable to see the new Neurologist on Tuesday. They claim to have never received a referral from my primary care, and that medicaid has something new with specialist doctors called "prior authorization" office has no idea how long that can take.

So despite my desperate need of Neurological help I again am let down. Got an appt. in another 2 months. If I feel that I cannot handle symptoms on my own I will just have to go to the hospital.

New in the past three days:

- On the verge of not feeling right handed again
- intense muscle spasms
- Hot tingling body buzzing
- My knee starts to curl my left leg up involuntarily
- Bad neurological dreams
- Confusion, spacing out and not realizing where I am or what I am doing
- Slurring and stuttering

Bodily pain is increasing, fatigue is more intense, spending more time in bed.

Not on fire!

Guess who's bladder and UT is not on fire?
I guess these infections are going undetected due to prednisone? Scary. At least I have releif now due to antibiotics.

My appt with the new Neurologist Dr. Kreiss got moved up to tomorrow... At 7:30 am. I am nervous. I have a lot to say and I forget things..... Yes I have important stuff saved on this blog. Unlike the rest of the world I do not have a smart phone or any device that connects to the net outside my wifi at home. Thank goodness for my mom! She also has a neurological disorder much like MS and forgets things too but maybe between the two of us we can make sense.

My arms and legs hurt so badly today. I have a heating blanket on my legs right now.. I had planned on trying to clean up the kitchen some today (with MS there is no such thing as planning I have realized). Took one of my few precious pain pills and am waiting for it to work.

Doctor visit, Much Pain

So I realize I have not updated anything for the past few days. Honestly I have started an update a few times but have run out of energy to finish it.

Starting a few days ago my bladder and urinary tract has been on fire 🔥 Having a lot of nauseousness As well cloudy pee etc. etc. classic sign of infection. I know I keep writing about these symptoms but they just won't go away! I have been in bed with a heating blanket much of the past few days. (Btw the heating blanket is AWESOME for my arm and leg and bladder pain, on sale present from my mom)

I have been in severe pain the past few days.. So much that I could not even take care of my snailery. Have not been out of bed much. I decided it would be wise to see my doctor and get another pee test done. (Went to the e.r over this 3 weeks ago and tested negative for infection) I am not crazy, this localized pain is very real!

So visit to My primary care Dr. Snow yesterday with nurse practitioner. Peed in the cup, and it came back negative for typical infection, though it did show levels that indicated a high ammount of inflammation in the UT and bladder so something is going on in there. I mentioned that perhaps since I have been stepping down from prednisone (Prednisone reduces inflammation) that my inflammation has possibly increased? She said she had not thought of that but that could be a likely possibility.

She was still suspicious of infection and decided to prescribe a different antibiotic than the other two I have taken. Also she put in a referral to a Urologist since my case is a strange one and needs specialist help. (Of course it can't be something simple with me) Also going back in a week to report back to doc. She said a referral was put in over 3 weeks ago when I saw the doc last but I never got a phone call... She also mentioned that Dr. Snow put in a referral for wheelchair assistance but I never got a call from them either. Argh.

So! New antibiotic is Cefdinir. This is my 4th round of antibiotics since the 2 week hospital stay. Let's hope it helps! Also hoping for a phone call from urologist soon.

I got samples of Lyrica!! I am Ecstatic about this. Only About ten days worth but I am so sick of being in pain. I mentioned getting them from the manufacturer and she said next visit they will work on helping me get Lyrica somehow.

Need Lyrica

Things are still pretty cruddy.
Pain is steadily getting worse as well as symptoms. Waiting for meds to even out. Any time now!
My damn right eyelid will not stop twitching. The left one joined it last night! The more I do the more my body wears out and starts twitching.

I am going through the manufacturer of Lyrica to try to get it for free since it helped me SO much. Lots of red tape, but getting the process started. I am having to take pain pills again 😔 I don't have a lot left so either Gabapentin better work a miracle or Lyrica has to be affordable. Emotions are so outta whack.

So tired

So so tired today.
My stomach is very upset, took a Zofran hope that helps.

Stepping down today, 35 mg Prednisone to 30 mg. slowly getting there!

I ache. Every single tiny move has a consequence within the next 15 minutes. (pain) Sounds are really bothering me and my limbs are not cooperating. Super spacey today. Do not have tolerance of the outside world.

It is a beautiful day too 🙁

Not Winking at You

Annoyingly day three of my right eyelid twitching at random.

Body pain has not changed.