Knee Infection* JSA's OA and RA Journey

[jsa]

Thanks ... Yes @kneeper my GP wanted me to see my Rheumy quickly so I think he will be happy to refer me to another new Rheumy to the area who I know I can get into by November. I really need to get my RA back under control sooner rather than later.

I wish there was a better outcome for me but thankfully not many have this one so I dont hesitate to encourage others to go for a TKR when they ask.

 

[jsa]

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@jsa .... I'm so sorry to read this latest information about your knee. I'm glad you'll have a little time here to discuss these options that have been presented with your GP and hopefully with some of the others on your medical team. I certainly understand the surgeons' concerns about your welfare for any operation that might be attempted. You have a strong spirit and it comes through in your posts. I have confidence that you will make the best decision for you. Things like this are never easy, but a positive attitude goes a long way toward being able to pick up the pieces, make a decision, and go on to forge a good life for yourself. Please know that your BoneSmart family cares about you and we'll be here to provide whatever support and information we can.

Hi @Jamie ((((thanks))) I needed that. I really appreciate those words, I sometimes think I'm a woose because its been so painful. Not only does every step hurt but my leg often just has these weird stabbing pains in the muscles which I'm hoping will disappear as time goes on when I cease using it as much. I'm sure I can live with it all but am worried because I still need to take palexia every time I overdo it and thats one thing my liver can do without. This poor old body has been through a lot over the years but this is pain on a whole new level. But yes I will get through, even if it is with a few tears now and then....

My biggest other challenge so far is finding the best wheelchair. Because I am only 4' 10" very few fit me and there are certainly none on my island's city that allow one to attach an elevated leg rest for my stiff knee. So the next step is a custom made one that will be the cost of a car!! Guess life always provides us with plenty to complain about lolol.

 

[Jockette]

I’m sorry you need an expensive custom wheelchair. However, I look at some purchases, not as “expensive”, but as “priceless“ because we really need them, and you’ll use it a lot, and it will help you, and you can’t put a price on that. It’s not a luxury, it’s a necessity. I know it’s a huge amount of money, but try to look at it in this perspective.

You have been through so much and I really admire the positive attitude you have.

 

[sistersinhim]

I agree with Jockette. You can't put a price on your life. The chair is something you need and will use it. Therefore, it will be a smart and useful purchase. Go for it!

 

[Jamie]

Are there any options to get a wheelchair made for children? Just a thought.....

You know, tears now and then are sometimes a very healing thing. So don't be concerned if you need them to release some tension and allow you to clear the cobwebs from your brain. You're such a logical planner and I have no doubt that you will find the right path through all these challenges. May God bless you and continue to ride along with you as you deal with it all.

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[jsa]

@Jockette and @sistersinhim I totally agree, getting the right one that I need will be of most importance, no point being uncomfortable and in pain because it doesn't have a leg rest on it!!

Usually when faced with something that was not in the plans I tend to have a a bit of tunnel vision and I wanted to minimise the effect it had financially on us. But you are right, this is one time I can't be a scrooge. I will be sensible. I am also going to be considering selling my SUV that I have heaps of trouble getting into and getting a second-hand mobility car if the OT's consider me somehow able to drive but I wont know that until an assessment is done. Even the assessments cost approximately $1000-$1500 just for that, let alone more lessons and licences and car adaptations etc. But once again, it's important because more than anything I miss my independence.
We do have a thing called the National Disability Insurance Scheme for all disabled people living here which I have applied for. It's run by the govt and is great for the people who are approved however its so hard to get and I've even read that people in wheelchairs with MS/spine problems etc and others that are totally bedridden have been refused it. Plus it takes about 8 months to get a plan fully up and running which is crazy when you need a wheelchair immediately. Just as a personal gripe, I also took notice that the fees paid for professionals like OT, Physio's, Physiologists, Psychologists, Management Teams, and Planners etc etc are all paid double when it comes to being in the scheme because the govt pays for it. No wonder it's hard to get into when the money is being soaked up like that.

@Jamie I asked and they had only 1 child one to offer but it didn't have anywhere to add a leg attachment. I did see one on their books that I liked the look of one with an electronic leg rest but it seems as a trade off its a much heavier and more expensive chair and Ive been after one that is lightweight and portable.

Oh well, I'm sure it will all sort itself out, just a matter of sifting through it and looking forward to the good things that can happen in the future - after-all a new car is fun, right?

 

[BBCG]

Oh, JSA, I’ve been reading through your thread and am so sorry for all you have been and are having to deal with! You are indeed a warrior to rise above your challenges!

Your positivity and can-do attitude remind me of my own mother, who dealt with polio from her childhood with many surgeries and challenges all her life, too, all 98 years of it!
She had different challenges than you do, but I recall a situation when I was a child where she had to get a welder to customize a wheelchair that had a motor on it, so she could continue to work and drive! I was a kiddo, so my memories are scant but I remember going with her to a dark shop where the fellow worked on her chair and got it all set for her. I wonder if there is a chair like you want that a crafty person could be found to make it what you need?

I do admire your spirit of following that Irish prayer about accepting the things you cannot change! That was her favorite prayer, too, she had it framed near the kitchen to help remind her!

As others of us have said, we do send you prayers that a perfect solution to your needs will be found that enable you to retain your independence despite the formidable challenges that may lie ahead. We will be cheerleaders whenever you need us, or listeners when you need that as well… virtual hugs and many prayers coming your way!

 

[kneeper]

I hope with the expense you will be able to "test drive" the wheel chair--it will be like buying a car--but more important.

 

[Jamie]

I hear you about wanting lightweight and portable. But if this is to be your main means of mobility, you may want to get something that is more substantial which means it will tend to be heavier. They make racks that go on the back of your vehicle that you can basically just drive the chair up on and off. You might take a look at that possibility. Some are so clever and can be operated easily by one person. Here are a few examples. The third one even has a cover to keep the chair out of the weather.

 

[BBCG]

@Jamie, those are helpful photos of options out there… my mom had polio as an infant so always had adaptive mobility devices…was a feisty early-adopter of some of them back 35 years ago. She had a Mobie device that disassembled so the pieces could be put into the back of her sedan! It WAS a “pain in the petunia”, though, for us adult kiddos, who helped her with it, as she couldn’t lift the two very heavy batteries. We just considered it our upper body weightlifting for that day. At home, my dad sometimes helped her after she stopped being able to lift them. One of these devices would have been so helpful!

I’m so thankful things like this exist now. And, @jsa, I’m not sure where you live, but let us know if we can help you find options for your future plans as they become clearer…

 

[jsa]

Hi @BBCG Thanks for taking time to remind me that you can still live a full life until 98 if you just get organised and tailor things to suit your particular situation. She sounds a very strong woman, one you sound very proud of. It's funny your story is so relevant because today my SIL phoned to say that she mentioned my situation to one of her customers and they said that they actually did wheelchair modifications for users when they can't find exactly what they want. I will definitely look into it further.

I've never been one to dwell on negative things because I find it such a waste of precious time.
I also chased up the on the NDIS that I applied for and they said they had sent me a letter a few weeks ago but then she retracted it and said she couldn't get into the letter so someone would have to ring me back.... so far no word.... theres always an excuse!!!

@kneeper I am trying hard to get one down here where I am because as you point out (and as Ive experienced) they are all very different and some even downright unsuitable even though they may look ok. Trouble is the only one I think goes close to being suitable is on the mainland :( .... however I'm holding off because I do want to try it first. Plus they said if I send it back they take 15% restocking fee (on $3,900) as well as pay for the return postage and they wont take the return of the leg rests etc which is about another 1k for that package. Thats a lot if it doesnt work out.

Thanks for taking time to post that info @Jamie, that's not a bad idea... I will see if they have them available here or on the mainland. I have to find out if I can drive first. If not I will be relying on hubby to do the transporting of the wheelchair so it will be up to him but I will definitely show him these if we have them. I know we have some heavy duty lifts in the big vans but I like these lightweight ones. Ta!!

 

[LaJudes]

I just read your story . I was directed to it because I was looking for information on the hinged knee replacement. I just had that done 3 weeks ago . My revision surgery was due to infection . So I had the spacer and no weight bearing as well as a pic line for 6 weeks of home IV . It started on April 19 and final replacement done on June 28 . I did have a dislocation of the temporary stuff on June 2 , they had to put me in surgery to reduce it . I go back in 1 week to have the staples removed . I still have a brace but am now weight bearing . I have a real interest in the hinged knee replacement , as I got very little information from my surgical team . I wasn’t even aware that they were considering it until the surgery was done ! I am now thinking that the hinged replacement hasn’t done anything for you since you are keeping it straight . So sorry to read about all your problems and setbacks ! I was so worried about ending up in a wheelchair , l told my husband don’t even bring me home ! I did use the wheelchair and walker when I was in the no weight bearing stage . I was a bad driver , got the woodwork and door frames all scraped up . Don’t think I could do that permanently . You have been fighting through so many hard setbacks , l hope you are doing better , l really admire your perseverance !