Author Topic: Managing Sjogren's a Full Time Job?  (Read 2075 times)

A Mom on Spin

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Managing Sjogren's a Full Time Job?
« on: April 26, 2017, 03:18:13 PM »
Does anyone else feel like managing this disease is a full time job?

I walked  out of my rheumatologist's office the other day needing appointments with an infectious disease doctor, a hematologist, a pulmonologist, a psychiatrist, a gastroenterologist, and my eye doctor. Also need to schedule an EKG, nerve conduction study, echocardiogram, and an endoscopy.

I picked up 11 different medications at the pharmacy yesterday.

Is this crazy, or what?   I am now on something like 14 or 15 different meds.

How many medications are you on?  And how do you stop  this whole process from taking over your life?

Liz
www.mysjogrenslife.blogspot.com
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Primary SJS. RA & lupus. Positive ANA, SSA, anti-phospholipid Antibodies. Large and small fiber peripheral neuropathy

CureSjogrensNow

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Re: Managing Sjogren's a Full Time Job?
« Reply #1 on: April 27, 2017, 10:38:48 AM »
Yes. This is exactly what it is like.

Joe S.

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Re: Managing Sjogren's a Full Time Job?
« Reply #2 on: April 27, 2017, 03:11:08 PM »
I am on 8 meds and 20 supplements. Most of my meds are for other issues. The meds for Sjogren's I am allergic to, so I use supplements. When you start out the DR visits are overwhelming. Then they are reduced. By the way you should check in with your dentist also.
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AnneNeville

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Re: Managing Sjogren's a Full Time Job?
« Reply #3 on: April 28, 2017, 10:30:40 AM »
Yes. It does feel that way to me. However, it's better than before, when I felt like I was trying to fix my health full time but had no idea what was wrong and whether anything could help.
Diagnosed with primary SS 2/2017 after 20+ years. Double vision from 6th nerve palsy, severe anxiety (now gone!), fatigue, dry eyes. Now: 12.5 mg Prednisone (burst), 200 mg Plaquenil, Prozac, Wellbutrin, Restasis, Xiidra.

A Mom on Spin

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Re: Managing Sjogren's a Full Time Job?
« Reply #4 on: April 28, 2017, 10:54:58 AM »
On the other side of the coin, I guess I really shouldn't complain.  it's encouraging to know I now have thorough doctors!
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Primary SJS. RA & lupus. Positive ANA, SSA, anti-phospholipid Antibodies. Large and small fiber peripheral neuropathy

susanep

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Re: Managing Sjogren's a Full Time Job?
« Reply #5 on: April 29, 2017, 12:59:38 AM »
I am on about 15 meds per day too.  :(

susanep
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Nymph

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Re: Managing Sjogren's a Full Time Job?
« Reply #6 on: April 29, 2017, 07:42:31 AM »
Sometimes it feels that way. You go through phases. At the beginning, when you develop new symptoms, or when you have a breakthrough on a mystery symptom, it seems to take a lot of effort and becomes all-consuming. But I find that I also have long stretches of time where I'm just in my routine... rheumy, ophthalmologist, dentist. I might be adding a neuro to my regulars, if I find the right one!

Then what's left is just the care and feeding of your special-needs self. All the hydrating, lubricating, and medicating. The special diets and extra rest periods. The routines. Once in a while I stop to think about how weird this all is for someone of my age. But most of the time I just do it and get on with my life. So, yes and no.
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A Mom on Spin

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Re: Managing Sjogren's a Full Time Job?
« Reply #7 on: April 29, 2017, 11:05:37 AM »
I suppose it's because I just got diagnosed with RA and lupus along with my Sjogren's.  And my small fiber neuropathy has gone haywire on me - popping up in different places at record speed.  I'm off prednisone and all immunosuppressants, awaiting clearance for my first doses of Rituxan and IvIG, so I'm in a lot of pain which has a way of not letting you forget about your disease either.

Even though I've been "disabled" from Sjogren's for three years now (and diagnosed for 7) I can honestly say that this is the first time that I'm worried about my health.

And Nymph, you're right -  I start to hate the humidifier, eye scrubs, goggles, wrist splints, toothpaste, gels, and foot soaks.  Sometimes I can't even remember everything I need to do just to go to bed!
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Primary SJS. RA & lupus. Positive ANA, SSA, anti-phospholipid Antibodies. Large and small fiber peripheral neuropathy

irish

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Re: Managing Sjogren's a Full Time Job?
« Reply #8 on: April 29, 2017, 03:13:19 PM »
Then there are the days that you sort of just ignore one or two of those chores cause you get so sick of the routine and being almost a slave. I always hated the mornings the most, dentures, eyes, body lotion where needed, eye drops, oral medications, inhalers, chapstick, vest for 20 minutes percussion to chest along with nebulizer, and then sit down and rest cause.....It is now time to go to town and have to gather up the sjogrens supplies for a day of comfort. The water and Kleenex, meds etc to make it through the shopping trip.

Yes, being ill does take time and it is almost a full time job at times. As the others say...there can be periods of time when the docs visits are a minimum and then something kicks our diseases up a notch and it is a constant battle. I have been in this mode for the past year and I am also sick of going to the doctor. I have doc appts in town 30 miles from me in 2 weeks and have 1 a day for 2 days and then 3 appts on the third day. Can't seem to get them in a better order sometimes. Also have my infusion 80 miles away next week and that is a 2 day thingy.

So, yes, most of us are in the same boat. We do buy a lot of gas, put in a lot of road time and keep the doctors incomes up. I tell my ENT that after 20 years of seeing him I must have contributed to some college funds for his kids. Best of luck to you all. Irish

Jasper

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Re: Managing Sjogren's a Full Time Job?
« Reply #9 on: April 29, 2017, 03:53:14 PM »
Liz ..... I can empathize with you.

There are so many things we have to do just for "maintenance." I think we just have to do as much as we can to maintain. It is tiring and, at times, annoying, but we do our best.

Luckily, I am not on that many prescriptions .....Restasis, HRT, Plaquenil, Myrbetriq, and Rituximab infusions. I also take Calcium and Vitamin D as well as several supplements. I am cutting down on some of my supplements since I am receiving Rituximab and may not need all of them.

One good thing is that you will finally be getting some real treatment (Rituximab and IVIG), both of which may improve your symptoms dramatically and reduce your disease activity.

Rituximab vastly improved most of my symptoms and I now have a life again. I am hoping that Rituximab and IVIG improve your symptoms and reduces your disease activity,and that your life improves dramatically (as mine did).
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SjoGirl

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Re: Managing Sjogren's a Full Time Job?
« Reply #10 on: April 30, 2017, 04:21:52 PM »
Hello Mom,

First, I'm very sorry to hear of your plight. It sounds as though you have quite a number of issues which require follow up.

Second, is it accurate to think that you are still seeking clear diagnoses for some issues? I know that when that was the case for me I felt like all that I did was see doctors. Once docs were able to clarify what the real issues were, and we finally came up with a treatment plan (a process that took about 8 years) things settled.

Third, I'm now finally at the stage of having docs day I'll see you in six months. That has been music to my ears.

I do take quite a few meds, far more than I would like though not as many as you. What I have learned is that I need meds, like it or not (and I detested the idea). Part of why it took 8 year to get to where I am is because I didn't have the right docs, but I also avoided taking meds. I kept hoping I could fix my issues on my own or with supplements or that I would simply get better. After I finally decided that SjS could take over my life or I could take charge I am in charge and my SjS is in remission.

We are all different so I can't promise you will end up in remission, I can say that there are different paths we can take to being as well as we can be and how well we can be will differ for each of us. I hope you will find the right path and that it will lead you to a good way station (we never arrive at a destination, we just stay on the journey).
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A Mom on Spin

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Re: Managing Sjogren's a Full Time Job?
« Reply #11 on: April 30, 2017, 06:19:12 PM »
Thank you all! 

Although I now have comfirmed seriologic diagnoses of Sjs, RA, and lupus, along with biopsy confirmation of SFN, I'm still in the business of ruling out scleroderma and pernicious anemia and getting cleared for both Rituxan and IvIG infusions.  Hence the number of doctors' appointments.  Also need an EKG and a psychiatrist to prescribe provigil for fatigue.

Along with that, I'm in the middle of battling with my LTD insurance company who has decided that I am able to work again. Ha!

As I sit here after having iced my feet and legs, limped upstairs to start the humidifier, taken my last seven meds for the day, about to put my moist heat goggles on my newly-scrubbed lids, before crawling into bed with my gelled eyes and wrists splints, I wish that all of us could get the relief that Jasper speaks about.

Perhaps one day . . .

Liz
« Last Edit: May 01, 2017, 04:12:20 AM by A Mom on Spin »
www.mysjogrenslife.blogspot.com
https://www.amazon.com/author/lizwilkey
Primary SJS. RA & lupus. Positive ANA, SSA, anti-phospholipid Antibodies. Large and small fiber peripheral neuropathy