Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Getting older - not my "Golden Years"

Jul 26, 2019 12:37 PM

It's been a week of one frustrating doctors appt after another. Tuesdays PT session included increased weights and counts in exercises. Just as happened last Friday with changes then, I came home and spent 3 days trying to walk with my walker because my hip socket hurt so bad (to put full weight on the leg) that I couldn't sleep and couldn't use just a cane; 3 day setback both times. So today I went in and told her I could not and would not do the 8" step box because I'm positive it was the cause along with too much increase too soon. She backed off on some and even allowed me to skip a few exercises to see if it helps. I've been home from PT 3 hours and I'm already having hip socket pain. I'm using my hubby's Tiger Balm because lately it's been the only pain ointment to help with my joints pains, arthritis or otherwise. I'm frustrated because today was my 20th visit to PT (along with exercises at home) and I still can't walk without my walker (cane only) longer than 2 hours around my house. My surgery was in May for crying out loud!

Wednesday I found out I need an EGD to check the status of my barretts esophagus (precancer), but I expected that since he's done one yearly for 3 years. What I didn't expect to hear him say was there isn't anything we can do to help the bladder/bowel control/loss problems, due to damage in my pelvic floor muscles related to the 2010 pelvic mass surgery. After multiple treatments and testing it's concluded that I have non-reversible nerve damage (not spine related at all). Not only are bladder & bowel symptoms going to worsen with incontinence issues, but now I also have to watch for infections due to retention from inability to "go".

At another appt yesterday I found out the MRI on my low back shows no disc/nerve issues, but I do have bad OA in my lumbar-sacral spine & hip. But he can't explain the sciatica cause. Ok, I can deal with that just like I have been. Then thankfully (about time) I found out my 2016 C3-4 cervical fusion is healing, slowly 2/3rds. But the 2017 fusions at C7-T1 isn't healing at all; zero-zip-zilch. He said some long description diagnosis but all I caught was "atrophic" & "pseudoarthrosis," meaning (per the doctor) worse than just "failed healing" in a nutshell. It looks like I'm facing surgery again on my neck and thoracic in 6-12 mos bc not healing means the screws can come out and either go into my esophagus, or worse go into the chest cavity near the heart (life threatening). He wants to now do a MRI on my full thoracic area, due to what shows in the cervical MRI. He says I'm going to need rods placed to keep my spine from curving & collapsing forward abnormally. Ugh! Will it never stop?

BTW... if anyone who has had the rods put in their spine can share their experience I'd really appreciate it!

After seeing him I had an appointment with my psych doc. He flat out said, "No more surgery that isn't life threatening for at least 6-12 months, and I'd prefer you to be off the walker. You've had too much mental, physical & emotional stress over the past 4 years, from yours & your spouse & all y'all's parent's needs. You need a break and I'm ordering it!" I love that doc! He got me under my rheumatologist and my endocrine docs when my PCP wouldn't listen.

I'm praying God starts my spine healing & stops any further deterioration of my spine, or rather my whole body. The arthritis flare that hit in June with the Sjogrens-Fibro flare has not stopped in my left hand, it's worsening slowly. It's hard to stay positive under so much stress but I sure don't want to become negative, grumpy & bitter. When my hubby starts gripping about having peeing accidents I tell him "I'll trade you any day of the week...I'll pee & you can 💩 yourself accidentally!" Lol he stops complaining.

Ok, enough ranting. I'm going to find something funny to watch, or maybe even take a nap (since this weeks lack of sleep has me tired). Thanks for listening! Everyone have a blessed weekend with hugs love & prayers! 🙂❤🙏🌼

Jul 26, 2019 3:38 PM

Hi Flappy how I gave a rod and fused in my back that’s why I’m going in Tuesday next to see if , Lidocaine shit will work before the Rhyitzotomy procedure.
I have to go through two months therapy even before the Rhyitzotomy ugh also.
Sorry to here for you Flapoy my prayers go for you and everyone here .. btw , I even have to take a Valium half an hour before the shots hmm 🤔..
Hug to you all Shore 🦋🙏🌈🌈❤️🤗

Jul 26, 2019 8:33 PM

So sorry to hear all the 💩 that’s been happening in your life sweety. It seems like it never ends. I have incontinence of bowel and bladder myself. I agree I’d rather trade with someone who tinkles once in awhile vs having an 💩accident any day. I totally agree with your psychiatrist FlappysLady. You have had so many stressors in your life. You need a break to allow yourself to heal physically and emotionally. My PCP has ordered me no more surgeries except if life or death. He stated my body can’t take any more. I believe you are at that juncture in your life. Surgery upon surgery isn’t allowing you to heal properly. You desperately need this time off to heal.
I care about you my friend and can see that your body is revolting saying it’s had enough! Listen to it. Be kind, gentle and loving toward it. I’m not saying you haven’t but you seem to be back to back in either operations or disability. Take care Georgia Peach! I will be praying for you that you make the right decision. Gods peace be with you.🙏🦋🤗

Jul 27, 2019 4:36 PM

Hi FlappysLady81! I'm sorry you're having so many problems. I agree with the Psyc. You need some rest. I had an MRI of my neck. I have a bulging disc at C5-6. I don't know what can be done about it. Haven't heard from the doc yet. I'm having the nerves burnt in my lower back Aug 28th. I hope everyone has a good weekend.

Jul 27, 2019 10:35 PM

Hi animal I’m have that done Rhyitzotomy just not sure when. My first test shit is Tuesday 1.30 nervous bc I’m take Valium never had that before. Hug night everyone . Hug to all Shore 🦋🌈🙏❤️🤗🤗

Jul 29, 2019 11:46 AM

Thanks Shore! The Valium is just to help you relax; I've had to take it before procedures too.

Painwarrior, thanks for making me laugh! I'm totally in agreement with you & AnimalLover2 (thank you too!), that my body just needs a long break. Unfortunately I'm scared some of the symptoms I'm having with my neck & upper back may cause me to need surgery sooner than later. I've been letting my hair grow since my Dad passed away in 2018, and it's shoulder length for the first time in 35 years. For the past few months I'm noticing lots more pain between the shoulder blades and in the low neck, always after showering & drying my hair. My hubby told me to get it permed so I can just wash and go (like when we first married), and then cut it short of it doesn't help reduce the symptoms. I'm just sad I'll lose my hair after waiting so long to grow out...slowly. I have my EGD Friday and I'm just praying there's no bad changes in the Barrett's Esophagus. I do suspect I have a stricture again, causing the hiccup-belch episode. That just requires a balloon stretching. Oh well, one step at a time 🚶

Hugs love & prayers for a good day for all!🙂❤🙏🌼

Jul 29, 2019 12:33 PM

Hi ty Flappy I’ll tell you updat Thursday sometime.. hug to you and everyone , I am going to choir practice today at 1.30 I hope this will relax me , my fiancé sure helps me out also .)) later 🦋🙏🙏🌈🌈🤗❤️Shore I hope you feel better to flappy and everyone....

Jul 29, 2019 8:23 PM

FlappysLady I get the same pain between my shoulder blades neck and arms( especially shoulders). My PT that fixing my hair ( drying it with a dryer and iron) was causing me more pain because when you lift your arms up to your head you may be compressing a disc/nerve in your neck. I use to have shoulder length hair but it was to difficult to take care of it. My shorter hair is better but on bad days I still have that pain. I hope your EGD results are positive. I have my appt with a Hematologist/Oncology on Friday to. Trying to find out what’s causing all these blood clots. Yes our “Golden Years” aren’t so laid back as we thought. 😂 We’ve been more like “laid on our backs “ haven’t we? Well hopefully pretty soon our lives will improve...🙏 Have a great day. AnimalLover2, let me know how effective your nerve burning procedure goes. I’m considering it myself. Have massive issues to my Lumbar/Sacral region causing me a lot of sciatica to both my legs. Good luck on your procedure. Weddingshore, I think choir practice is a wonderful relaxing thing to do. Enjoy it and relax. Love and best wishes to all. Wishing everyone as pain free a day as is possible.🙏💜😘🤗🎵

Jul 29, 2019 8:58 PM

Hi actually just a test shot before the procedure I won’t get that tell they see if this works first . But I will let you all know after I have recovered the end of the week..
I’m on Valium 5 mg tomorrow a not sure how it will effect me . My fiancé will be drive me there and back and he had issues of his own with one leg so it will be interesting to see ...
He said the things you do for those you Love ❤️ Unconditionally. I love it when ever he says this to me,
He calms me down so much and my Chaplain ))) we just got back while ago from dinner tonight with my Chaplain))))
It was really relaxing 😌 it help me to be distracted tonight , then my fiancé can’t over he just left a while ago ...

I’m so Lucky on getting all of this done with this much support and in here ty to everyone... I’ll just know it will be done soon .
Hug night to everyone I’ll be praying 🦋🙏🙏🌈❤️ NWT my friend with the stroke said my prayers and all helped , bc they think it was something else that should if not happen but she is good .... ty night Shore was

Jul 30, 2019 10:11 AM

Lol Painwarrior! The "Golden Girls" made it look too easy! Keep us posted on your hematologist/oncology visit. I'm praying it's nothing major. My recent MRI show no reason why I'm having sciatica. I'm hoping to get in for a second opinion somewhere in the next few months, for my whole spine.

Shore it's all going to go well for you! 🙂❤🙏🌼

Jul 30, 2019 11:16 AM

Hi ty Flappy lady I gtg soon 12:20 so ty very much hug to all 🦋🙏🌈❤️🤗Shore

Jul 30, 2019 1:30 PM

I love the Golden girls! I wish life was that easy. lol I hate when they tell you there’s no reason for your sciatica! Let them have the pain then let’s see how fast they find a reason. Today it’s raining. 💩 day for me. My tail bone pain is bad. Took 2 arthritis extra strength pills wasn’t touching it 650 mg each pill. Put on lidocaine ointment... nope nada zip! Finally took my Percocet. It took the gnawing deep bone pain away but as usual not completely. I’m happy it’s dulled the pain. Just one of those days I guess. Get those second opinion girl. Oh and yes I would be Rose of the Golden girls. But love the spunky Sophia!😂 Hsve a great day FlappysLady. Hi and A hug sent your way Weddingshore! Peace love and Happiness to you both. 🙏🤗😘🦋👵

Jul 31, 2019 8:12 AM

Lol, I wish I were Blanche or Sophia, but I'm nowhere close! My lidocaine ointment doesn't work at all. I've been using Tigerbalm Ultra strength a few weeks & it helps the best of all ointments, though temporary. I've heard others on here talk about it, so I started taking Tumeric capsules about 10-14 days ago, and I've noticed a decrease in the pain I have been having in my hand/finger joints. I don't know if it's really helping or if the flare up I've been in is just calming down. Part of me wants to stop taking it to see, but the other part of me screams, " NO! Don't risk that pain returning!" 😲. Hope today is good for everyone! 🙂❤🙏🌼

Jul 31, 2019 11:13 AM

Hi I’m kinda of a Dorthy I think .? Hug have s nice day ty Shore 🦋🙏🙏❤️

Ready to start relieving your pain?

Join Community