Sunday, 16 November 2014

Long-term Arthritis Limits Her Lifestyle

My lovely friend Julie was kind enough to detail some of the ways that having rheumatoid arthritis complicates her life. This is not the most optimistic post ever seen here, but I have to agree that it makes things less fun when you have to plan every detail in advance as if you are a one person army. Here are some of her experiences. Go Julie!

Several years ago, I came down with a very bad upper respiratory illness that turned into pneumonia.  The doctor did a chest x-ray and they found a nodule.  Of course, everyone was afraid that it was a cancer.  I was sent to a pulmonary specialist (probably one of the best doctors that I have ever been to see).  His office told me to bring EVERY chest x-ray that I could find - any that I had ever had.

From looking at the previous x-rays that weren't very good, he thought he saw a small spot on one of the previous x-rays.  He said he was very suspicious that it might be a rheumatoid nodule.  I had more x-rays, a CAT scan and a Pet scan.  From all of the testing, he determined that it was indeed a rheumatoid nodule in my right lung - but to be on the safe side, he had CAT scans done every year for 5 years.  As the nodule remained stable, he released me.  He said a cancer would grow quickly and be the size of a baseball or grapefruit.

Not a great choice.

I had breathing tests done and I have mild COPD and mild emphysema.  He does not want me to take any of the strong Arthritis medications as he has seen too many lung complications with those medications.  I have not been back to see him in awhile so no telling what is going on with my lungs now.  He told me to come back if I noticed any problems and so far - so good.

But - what does a person with severe arthritis do?  They have to try something - right?  Thankfully, I have moderate arthritis and get along with a small dose of prednisone and pain medication plus supplemental treatment like physical therapy, lots of different splints, surgery on my feet, resting, watching my diet, medications for other problems - etc.  I have had several problems due to the inflammation of RA especially in my intestines.  The RA has given me eye problems and I had a 90% blocked carotid artery plus numerous other problems.

It is really a toss-up.  You can treat the RA with strong medications and end up with more internal problems or you can take not much of anything and just struggle along and still end up with internal problems.

I also developed kidney dysfunction and the kidney specialist does not want me to take any of the strong arthritis drugs either - especially NSAID'S.  I have never taken anything but the 1st round DMARDS  (Disease Modifying Anti Rheumatic Drugs) - arthritis medications or prednisone. None of the DMARDs helped me at all.

I am also tired of the awful fatigue and not being able to plan what you want to do because you don't know if you will feel good enough or have enough energy to go through with whatever you might have planned.

They're tired and they can't get up

As the RA has also affected my intestinal tract, I never know if my digestive system will allow me to eat something so I have to be very careful of what I ingest.  It seems like we will plan to go out to eat and when the time comes to leave, I have stomach cramps or some other ailment.

I can't entertain like I used to be able to do as I can't stand up the amount of time necessary to cook.  My feet start to swell and hurt too much and I have to go and sit down.

I resent all of the time it takes just to take of myself - taking medications, putting lotion on arms and feet, drops in my eyes, etc.  I also have to schedule a rest every day after lunch.  That kind of cuts into the day!  I don't like that I can't wear different kinds of shoes and that my clothes have to be rather loose as I can't stand anything tight because it hurts my skin.

I also don't like the fact that I am unable to just get up and go and take whatever comes along.  When we travel, the bed has to be soft enough for me - so we book hotels where we know the beds are comfortable (more expensive).  We also have to book a suite-type hotel with a kitchenette so that I can eat breakfast in the room as I can't function until I take my medication and it has to be with food.  No going down and eating with regular people.

I don't like the fact that I can't be around anyone that is sick because of my weakened immune system.  That lets out many functions at the schools, church, birthdays and more.  My doctor doesn't want me to go near a hospital unless I am the patient.

Like you, in order to get things done, I have to organize everything like a military operation.  So much at a time - no more.

We all know there's more but that is enough for now.

Thanks Julie!



    1 comment:

    1. Great insight on r/a and trials and tribulations. Thank you !