First rheumy visit over-here's how it went

General
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Signed in at desk, gave them pre-completed paperwork and copies of prior blood work and other related test results. Short wait, taken into exam room, gave non detailed info to nurse, she took vitals, ht, wt, blood pressure and updated records accordingly. changed into a patient 'robe', opening in front (got to kept undies on..lol). Doc came in soon after. (funny little guy...in a good way) He asked detailed questions, listened to my concerns/symptoms, mentioned some things that i should have remembered to discuss. Then he checked my hands, nails, mouth, skin, limp nodes in neck, reflexes, range of motion of neck, arms, shoulders, legs, back. Below is a letter I just sent to my employer...explains the outcome (easier to copy and paste, instead of re-typing...my hands are tired). The only thing I didn't put in that letter is that he thinks I may be having 'mini strokes' and possible afib. have appts with neurologist and cardiologist in next two weeks. HAVE A GREAT WEEKEND, EVERYONE!!!!! this Vit D thing, seems to be a big boost for lots of people....I'll let you know! ;)

LETTER TO EMPLOYER~~~~~~~

As stated, I just want to update you on my visit with rheumatologist. I have osteoarthritis in my hands and probably my neck, shoulders and back.
Has ordered the following;
X-ray of spine, to see exactly what/where and extent of the problem. Will wait to prescribe medication, pending results. He mentioned a drug (that starts with a "P", sorry, I can't remember the name, but has little side effects. He said pigmentation in the eyes is the most common, but "fairly rare"...(the good news is, it's non-narcotic and non-steroidal).
I am extremely deficient in vitamin D. He gave me script for very high doses of D2, for eight weeks, will re-evaluate after that. Scripts for arthritic CMC hand/thumb brace for both hands. Also given therapy instruction for possible relief of some pain, of all effected joints/muscles.
DNA blood work, more selective blood work and urine test, to pin point the Lupus syndrome/symptoms.
I will be calling, today, to arrange for the x-ray and other tests, at a FMC facility. Tonight, thank goodness, I get to end the constant beeping of my 30 day event monitor and wait for the reading/results (should have the report before cardiologist appointment on March 11).
***Please acknowledge receipt of this email. This, also, is the 3rd request for you to EMAIL ME A COPY OF THE LAST FAX YOU RECEIVED FROM MY PCP, so I KNOW that you received her order. (I was asked, specifically, by Kevin, to always follow up to make sure communication(s) from 'anyone', are received by FMC...and never to assume faxes/emails, were sent or received.)
Again, what are your thoughts of 'working from home', until this is all figured out and I am released to return to the office? I strongly feel, with the abilities of Allscripts and a connection to other patient records based programs...I would be a tremendously beneficial to the Case Management department - and/or other departments, if that is a possibility. I could make patient care follow up calls, insurance coverage calls and type correspondence or projects (employee manuals, MSDS updates, type updated FMC policy, work with advertising/marketing, etc.). In my home, I have a land line and cell phone, internet, up to date, security packaged including virus, spam and encryption, on desk top, lap top and tablet computers, all-in-one copy, scan, wifi-blue tooth printer-fax machine. Some of my software is a complete Word Office Pro bundle program, which includes Word, Excel, Power Point, Outlook, Access, Publisher and Silverlight.
Hope to receive email from you VERY SOON, addressing all of these matters. I appreciate your time and hope you have a wonderful weekend.
Looking forward to a better tomorrow - Take Care, Deb F.
cc: PCP and my Advocate

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Feather,

Seems as though your rheumatologist is very thorough and you are pleased with him. This is very positive. The drug he mentioned is probably Plaquenil---many "lupans" or those with connective tissue disorder that can't be defined take the drug now or have in the past. You were very thorough in your letter to your employer. I hope you have a good relationship with them and that they are fair and helpful to a good employee such as yourself.

I look forward to reading your future posts. In the past, I dealt with my employer while trying to figure out what to do about my health issues.

Look forward to your future posts!

All the best,

Lupancatwoman

P.S. If you go on Plaquenil you will likely need an appointment with your ophthalmologist every 6 months to a year. It's not a big deal at all.

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Just a note about notifying your employer. May not affect you, as your employer may be a "decent" person. Here's what happened to me with my employer.

I'm a web developer and I can work from anywhere in the world as long as I have an internet connection. I had a 45 minute drive to and from work, so that caused part of the stress and tiredness. I was having a hard time on Thursday and Friday and asked if I could work from home on Wednesday's to give me a little break during the week. My employer, who knew about my Lupus diagnosis said ok to this in September. He then proceeded to hound me about finding a new employ that I could teach to do my job in case something happened to me and I was out of work for an extended period of time. I hired a new person and trained him to do my job.

I was then told in an email that I received after work hours that I was terminated. This is after working for this person for 8 years!

I honestly thought my boss cared for me as a person and was being super understanding. The minute he had someone else in place to do my job, he fired me. I talked to a lawyer about suing him, but it's such a small business that most federal disability laws don't apply.

Anyway, just be careful about how much you share with your employer.

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I am glad you liked your doctor and that it went well. He did what sounded like typical appointment.

What concerns me is all the personal information you gave your employer. I am not sure if you did this because they are very close with you or you felt you must tell them exactly what happen. With work, all you need to tell them is when you have a medical appointment, that is it.

I have this just really warning light feeling going off about how you said so much about your Doctor visit to your employer. I am bit confused why you would give them so much personal information as it is not any of their business. All they need to know is you have an appt that day and what time, how long you think it might last and when you might be back at work that day. If you are signed off from work completely on State Disability well they do not need to know anything.

I worry that they can use the information against you and others who are going through similar health issues problems. They could look at information you told them as you might not be working much longer so look for ways to let you go, such as saying to you that it is not up to them to make sure a fax or email gets to them by your doctor....well that is not necessarily legally so. BUT if you know your doctor has either emailed or mailed them a letter, i call after you know it should be there, have a copy in your hands when you call, ask if they have it yet as they should. Document the first/last name of people you speak with at your work, time and date, what was said by each person. If they do not have it, give them a day or two, call again and i call your doctor's office to find out when it was mailed or emailed and person it was directly sent too. Follow up until they have it.

As to working less hours, being allowed to sit or take the elevator that is easy enough. Just tell your doctor how they are not allowing you to sit...which does not make sense for secretary to not be allowed to sit since they must to use computer, and answer phones plus many other various duties. BUT just tell your doctor and they can write a letter stating that you be allowed to sit, plus have adjustable chair and computer desk( they really do help) and you can take elevator when you are too tired to take the stairs. That is just wacko...you cannot sit down..you mean you stand all day as secretary? Bet doctors get to sit down!!

But when i hear employer treating employee such as that, and says you need to make sure we get all your medical information ....just sends warning signs. So i hope in the future you do not give so much personal information. No reason. Even if your boss is your best friend, which my boss was at my job, ( long before she became my boss) i still only told her about when my appts where, how long i miss at work. Now at lunch or dinner ...in other words away from work, yes i told her about what happen but it stayed only with her where if i had wrote a letter such as you did, it would be open to many other eyes to read and last thing i wanted was for certain people to know such private things about myself.

I hope this makes sense to you. Some places just have it in for employees with illnesses and last thing i would even want to do is make it harder on them. Besides that is what HIPPA is all about and i am positive that in hospital they must know they do not need that information.So by them not even saying look we really do not need all this info, reminds me of police speaking with a suspect and the suspect is just really telling them all kinds of things they might be able to use..so why tell them to stop for their own good?

If you do want to try and keep working since you are so close to retirement, i try very hard to only miss as little work as necessary. I get that you have heart issues going on...if i recall you correctly. Hopefully they have found out if it is from lupus or something else. Some of devices you had to wear, remind of fellow employee and he had strange heart rhythms which drugs did help...was not lupus. So just remember if you have lupus not everything you get sick with is due to it or caused by it...it can just be something not related at all.

One thing you might ask your rheum is how to know when to worry, when to go see him vs your GP. He should be able to give you a somewhat clear outline when do do just those. I sincerely hope you can continue to work just for many reasons...helps keeps your mind off your health problems or even others. Self esteem is much better while working. Plus, you get a better pension as well as higher SS!! If you find you just cannot...i go on state for few months to rest and see if you can continue after resting. Just know when you do go on state they must give you same job or similar, with same pay etc...but they can change your actual job and hours. So if you do not have great working relationship with them really consider it, you might just bring it up with them.

I was always honest with my employers...and my bf was not my boss when i was diagnosed. I always tried to tell them as soon as possible about any surgeries, tests or appoints and how long i be missing work. I always tried to make them when it was good for my job. I never told my boss ever or any of them as much details as you did as most people just do not care...they care about what is going to affect them...you missing. Who will cover your job while you are gone etc.

I tried very hard to work with them and i was diagnosed in my twenties...so eventually i did go to part time but they gave me full benefits so trying to work with your job really can pay off!! I did end up having to leave about your age but what we did as soon as we knew i had chronic diseases so life long..we cut our budget to mainly live off my husbands. I put a lot of mine in 401, savings, bought groceries plus paid for entertainment. So when i did leave, financially we knew we could easily live off just my husband's salary even with mortgage etc. I strongly recommend trying to get your finances in that kind of place first if you can before you stop working.

If you do eventually try for SSDI, actually at 55 i believe it gets a lot easier so hang in there if you can for few years...but also document all calls etc as well. Do not believe anything you are told and even few times i have heard where SS even told someone something not legally right. Since you are near retirement age, more you work easier SSDI will become and higher you will receive.So just keep that in mind...plus it takes couple years to really understand how lupus will affect you and bad part is you are at age where things in your back like spurs and arthritis is normal part of aging...as well as in other joints...RA does tend to run in SLE as do other autoimmune diseases but some pop out immediately and others later on...so if you try and work while you discover how your lupus is going to effect you well might help with money as you learn now.

sorry so long... just be cautious about your employer...after working for them this many years i would hope that you have sense of who is decent and not but...sometimes there is rat in them you never thought would sell out and not be decent so be careful at this point. but i sincerely hope you have nice doctors who treat you well..i would think working in one you have access who are the good ones! may you have good relationships with all your doctors!!

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I really enjoyed reading your post! It’s great to see you remain so optimistic and it’s wonderful to see an individual take charge of her health and be so proactive! Thank you so much for sharing your experience!! : D