I Am Back...sort Of......

Hey all, thanks for your concern in my birthday thread and I appreciate the kind thoughts.
Sorry I have been absent for so long but healthwise I have had a really shit year and it is still ongoing with no end in sight. I don't get into my office much these days and I need the 55" screen to be able to read emails and forum posts.
When I am in bed I can no longer read my 18" laptop screen even when zoomed up so my time on computer has been really limited as I am now severely limited in movement and I have been told not to sit at my computer in my office because of a DVT in my right leg.

As some of you may know my SLE (lupus) has already attacked and damaged my optic nerves causing my near blindness and after being in control for the last fifteen or so years now it has started attacking other important nerves throughout my body.
Currently I am having more MRI scans on my spine and deep scans of my brain and then follow up nerve conduction tests pending the results of the scans. They are trying to determine if the nerve attacks are in my spinal chord or somewhere on the major nerves after leaving the spine. Not a pleasant experience.
The amount of immunosuppressants I am taking to control the SLE is five times the long term safe dose and I have been taking this level for over twenty years. It appears the SLE is no longer fully under control and the dosage can't be increased as I am already having some serious side effects in:- type two diabetes, bilateral lymphoedema in my legs, an 8.5cm continuous blood clot in my saphenous vein of my right leg, high blood pressure, myriad infections due to my suppressed immune system, a 90mm X 75mm benign mass on my right kidney that is too risky to remove, 35% lower kidney function and 30% lower liver function so all in all I am pretty well stuffed. Currently I am seeing a rheumatologist and neurosurgeon to see if there are any new drugs that I can take but it is not looking very promising. I am also seeing a haematologist for the blood clot in my leg and hopefully this will clear in a couple of months and I can move about a bit more freely.

Hopefully 2023 will be a better year for me as I have already written off 2022.

I will try and drop in more often but no promises as most of my time is spent going to hospital to see specialists and then coming back home to recover in bed from their tests.

 

Gday Mate....I know you are sick and weak right now and the path to recovery is not easy, if at all possible.
Know that you are a General amongst our army of friends online!
We are always here to lean on!

God bless and best wishes Joffa

 

What can I say? I will add you to the pray list I say for ailing friends. (The only family I have left is my husband and after a 13 month long problem with sciatic pain, he can now walk comfortably).

 

Being absent from MGs has really left a hole in my day....checking on members who are active in the lounge and around the forums for their birthdays and the pleasure of saying happy birthday from the future..........well to most places around the world. To some this may seem like an insignificant and pointless thing but it is something I enjoy and looking for a yummy cake I haven't posted before is always a challenge hehehe
BTW I am making amends and will try to return more regularly with a vengeance https://forums.majorgeeks.com/threads/happy-birthday-joffa.324415/#post-2052429
although I still have some hospital time ahead but hopefully things should improve after July or August.....here's hoping

Thanks Tim and it is nice to know there is support around the world.......yeah getting old sucks and I am guessing you being a similar age to me have enough issues of your own to be dealing with.....all the best

Thank you Laura you really are a sweetie and sage advice from you and Tim to "enjoy life where possible". I try to stay positive to set a good example for my kids as I don't want them to get the idea that if you get sick you don't have to work or do normal family things and so far I think I have been pretty good.....but a couple of the times in hospital, jeez it was a challenge especially when they come at you with stabby things to take tissue samples ........ ugh :-(
It is great having the forum for support and of course there is my job here lolol........... I have missed it but I am making amends see this https://forums.majorgeeks.com/threads/happy-birthday-joffa.324415/#post-2052429
Thanks again for the kind words Laura and I am sending you my very best wishes

Thanks mate..........I nearly looked you up as my wife went to stay with her sister in Bendigo for a few days over Easter as we were going to the Elvis show. I ended up not going because I was just out of hospital and still pretty crook but I was going to see if you wanted to grab a counter lunch or dinner and a beer somewhere as I know you are in the area.....maybe next time. Thanks for the kind words and it really lifts my spirit....take care and stay covid safe

Thank you plodr as I need all the help I can get.
Hmmm sciatic pain is not good as my mum (who is 90yo) gets it and when it is bad nothing seems to give her any relief except taking a sleeping pill and going to sleep but that is not a good way to be living your life. It is good that your husband can walk again.....saints be praised Thanks again and best wishes

 

These are not good procedures to be needing.....but I suppose if it brings relief then it is a means to an end. I hope everything goes well for her. Living with ongoing pain really puts a dampener on life.

My mum is still in the investigative stage but due to covid our hospitals and doctors are well behind in appointments and it has been delayed by about 6 months. I think she is having PET scans and MRI scans in late June and then follow up with her specialist in early July. So far they have tried massage and physiotherapy with exercises which have improved things but her mainly sedentary lifestyle doesn't help her situation.

 

My husband had 2 shots in his back. Unfortunately every time he seemed to be improving, he took a nasty fall. He went to a chiropractor but the treatment was bad for him. He had 3 different regiments of physical therapy. (Going into physio early one morning in the dark, he fell and fractured his wrist! That wasn't one of his nasty falls.) He has learned to walk slower and carry a flashlight!!!
The 3rd stint of physio finally helped. He has exercises to do at home and he does them every 2 or 3 days.

He now mows the grass, runs the snow thrower and is able to walk around large stores. At one point he had to use a motorized cart in shops because he was in pain. Fortunately he could sit without pain but not stand nor lay down certain ways.

 

Thank you Laura it's great to be sort of back........and yes I did get caught but it settled with a plea bargain......she had to admit that so far I have been very good at staying out of my office for nearly 3 months and doing everything the doctors have suggested so surely one transgression can be overlooked......it also helped that mother's day was coming up and I said that after the 5 hours at the hospital on mother's day to get my MRI scans done I would take her out to somewhere nice for dinner as a treat and a thank you.......it worked and I got off with a stern warning lol
I won't say where they put the camera or the stabby thing but one of the samples was from my prostate.......not a great experience but definitely memorable for all the wrong reasons..........yowza
I have had quite a few biopsies done because of the immunosuppressant drugs I take I am in the highest cancer risk category and have already had six or seven lumps cut out....more unpleasantness but hey I still survive and I still look forward to doing things with my family in the future
Take care Laura

Seems like your hubby has gone through the wringer but things are working out for him now which must be a relief
Hang on plodr.........."He now mows the grass, runs the snow thrower and is able to walk around large stores."....are you sure it is the same hubby lol
Sounds like a miracle comeback and it is great to hear success stories like this so thank you plodr

 

Your upbeat postings and cakes have brightened things on this side of the globe for years. Hope you get a break and get to feeling better. As an 82 y.o. retired pootymeister, I can sympathize with the old-age sneaking up on you. I was totally blindsided. But....as they say, Every day above ground is a good day! Best of luck to you. You are appreciated.

 

Thank you so much I appreciate the support I get from MGs and I am the eternal optimist........I try to post cheerful things because I know there are other members going through difficult times and if my posts only cheer up a few people then I have done my job because you being in the medical field, I am sure you understand that life can be very short so you may as well stay happy while you are here because being happy and having a laugh is the better option
Stay safe and congrats on attaining 82yo.......are you still spending time playing on the golf course or just in the 19th hole lol ;-)

 

Pete, you are one amazing person!
I don't know what to say...

I have an uncrontollable urge to beat the next person who compains about crap with their own colon.
After I make them read your OP.

You hang in there mate! And continue to be a pillar to all of us.

 

What he said!

 

Had to hang up the golf sticks (too hot here in Houston & minor heart scare ) but felt like handicap of 5 was as low as I would ever get it, so I feel like I left my passion on a high note. I do sometimes miss it though. Lot to be said for the 19th hole, heh heh.

 

I hope everyone on MajorGeeks.Com enjoyed Christmas.

Please have a safe new year when it arrives.

 

I'm sorry for everything you're going through. My dad suffered from Chronic Inflammatory Demyelinating Polyneuropathy, which was an acquired auto-immune neurological disorder where the body's immune system mistakenly attacks the protective covering (myelin) of the nerves. Kinda like Lupus, but not exactly. His symptoms were a lot like yours and things went from bad to worse when those symptoms prevented diagnosis of a more serious condition. I sincerely feel for everything you're going through, and I hope the doctors find a solution to offer you some relief.

I tried to search MG to see if there was anything I could find to help, accessibility features, I was unsuccessful. They're probably here, but I didn't find them. I hope there's a Web Accessibility Tool like Read Aloud or WebAnywhere, or and Assistive Browser or Eyes-Free Browsing and ChromeVox that can help you come back to us more often. I can't vouch for any of them, but that's what they're SUPPOSE To do... It's just good to see you on.