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cathys2007
Member
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Posted: Fri Jun 27th, 2008 02:00 |
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Anyone have experience working while on MP? Any suggestions managing continued working while on MP?
Thanks
Cathy
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Dx Sarcoid-lymph node biopsy/neurosarcoid 12/06/ FMS and IBS 25 yrs/ Narcolepsy/ Osteopenia/ Gerd/ Raynauds/ fatigue, brain fog, muscle pain, fevers, migraines/D12548, d2526/NoIR jan08
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John McDonald
Foundation Director
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Posted: Sat Jun 28th, 2008 07:08 |
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I have worked right along and I travel quite a bit. I started from a better position. I had already acquired something passably like remission from the older style antibiotic therapy without Benicar. But I sensed it was just a plateau and somewhat fragile remission so I began the MP. The first weeks of each of phases 1,2 & 3 were tough. At the start of each new phase I just didn't know what to expect or quite how to manage my herxing. As a result I tended to work poorly or miss days or I needed accomodation. Then as each phase wore on I sort of figured out how to work and herx.
My advice? Progress slowly. Always bump up a dose on a Friday so you don't miss work if it goes badly. Reduce an abx (or 2) if you need to be sharp for a meeting or for grueling travel. Expect to get it wrong now and again.
It really helps to have a job with boss and colleagues that will accomodate. The hardest in this respect for me has been phase-3 as my primary herx now is cognitive and emotional. Sometimes I get attention deficit herxing or I may imagine insult when none is intended. So, the key for me seems to be 'take it slowly'.
-john
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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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cathys2007
Member
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Posted: Sat Jun 28th, 2008 12:34 |
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John,
It’s inspirational to know others have continued working. I have a compassionate and understanding boss. He has allowed me to bring in a cot so that I can rest on my lunch hour. However, the company I work for is relentless in their requests for medical documentation and won’t give an inch for accommodations. The FMLA (family medical leave act) has come in handy for absences.
Your advice to “bump a dose on Friday so you don’t miss work if it goes badly” will be a big help. I am frustrated with my own brain fog and poor cognition because I should have been able to think of that myself. That’s why I love this site! Advice form others going through similar circumstances is priceless.
“Taking it slow” is the best suggestion. I’m sure everybody would like to reach good health quickly, but patience will make our journey more tolerable.
Cathy
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Dx Sarcoid-lymph node biopsy/neurosarcoid 12/06/ FMS and IBS 25 yrs/ Narcolepsy/ Osteopenia/ Gerd/ Raynauds/ fatigue, brain fog, muscle pain, fevers, migraines/D12548, d2526/NoIR jan08
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texlaura
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| Joined: | Sat Mar 29th, 2008 |
| Location: | Missouri USA |
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Posted: Sun Jun 29th, 2008 18:44 |
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I work part-time and have been on MP since April. It is NOT easy, but I'm not going to give up. I never used to dread going to work before, but now I do. I used to pick up extra shifts (for the $), but now I take any opportunity to get OUT of my shifts.
I must work, to carry the health insurance for our family (since my husband is self-employed). I'm blessed b/c my employer allows part-time folks to buy into the health insur benefits. I could never work full-time on MP, due to sun/light exposure and lack of stamina.
I also work as a mom, with parenting and household responsibilities that don't go away just b/c of starting MP. It can all be overwhelming at times, but I've learned to let the little things slide. I focus on the big things that have to get done each day, and plenty of things DON'T get done. Oh well, we're still surviving! On the days I'm home, I rest rest rest, to store up energy and emotional fortitude to face the next days' set of responsibilities. I pray and ask for prayer from others. My faith carries me through. Thankfully, some days are better than others.
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Lyme coinfections '02, food allergies '95, hypothyroid, Schwannoma tumor removed '04 (benign), 125D26 & 25D37,4/08 Ph1Apr08 Ph2Jly08 cytomel tylenol zyrtec benadryl NoIRs lite exp r/t work 25D24,7/08
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PaulT
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| Location: | Sydney, Australia |
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Posted: Mon Jun 30th, 2008 02:14 |
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Johns advice is very good.
I have been on MP for around 16 months and have worked the entire time, our office is open plan.
I discussed my requirements with my boss (very supportive) and he found me a dark alcove between the lifts and the stairs to work in (around 10lux). I got an all covering medical certificate from my MP doc stating I was doing MP and required dark and expressing potential symptoms that may occur. I sent out an email letter to the rest of the staff explaining MP and why I was doing it. I also had to visit our company doctor and explain the MP to him (and theoretically to get permission, there was no way he was going to stop me, but I guess he could have made life difficult) - he came at it from a 'do no harm' perspective and he could see no harm in MP - particularly in comparison to my previous meds.
We moved offices around 9 months into MP and I lost my very dark corner. It's now a cupboard and I was missing the interaction of the open office. I now have a desk against a wall and have removed the flouro lights above the desk and I have extended my partitions close to the ceiling with pinboards. This gives me pretty much 30lux. It also gives me somewhere to put photos of my projects,family etc
Overall I've had less time off during MP than prior to starting - but that said early on there were a number of days when I had to go home early (say 3pm instead of 5) as I was extremely tired. Also I was not very productive during the early stages (but I wasn't particularly productive pre-MP) but it became apparent to my boss by about the 6 month mark that I was working much better and recently he put me forward to relieve a higher grade position.
Advice - take it easy - don't push too hard. Find a dark corner to work in if you can, otherwise adapt what you can to get the dark. Keep covered up on the way to and from work. AND . . .. Always have spare meds with you, particularly Benicar and Mino
Last edited on Mon Jun 30th, 2008 05:53 by PaulT
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Sarcoid diag 1/05 - Cough, fatigue, Feb 07 125D=59.6, Oct 07 25D=12, May 08 25D=7.5 avoid light/D, Noirs, covering up, Zinc Oxide on exposed skin.
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k
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Posted: Thu Jul 3rd, 2008 07:28 |
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I'm another one who works whilst on the MP.
Until about 18 months ago, I had worked full time my whole life (after finishing university). It was often a struggle with CFS and I had a lot of time off sick. But about 18 months ago I got really bad and had about 2 months completely off work.
So at this time I had to have a serious talk with my boss and develop a very flexible return to work plan. My boss has been and is INCREDIBLYcompassionate and understanding and I trust her completely. (Though also, I work in the public sector which has more flexibility in than the private sector).
Then I started the MP. Before started the MP I talked to my boss. I said I'm starting a new treatment regime, I'm not sure exactly how it's going to effect me initially... I may need a lot of time off work in the next few months... etc etc. She was very supportive.
The key in my case has been keeping my boss as informed as possible (within reason - i.e. what she needs to know, which is not everything. she needs to know things like how many hours I am capable of being at work each week and what kind of stress levels I can deal with etc).
A big benefit for me of being on the MP is my 'being unwell' is a lot more predictable. Pre-MP I used to get EVERYTHING going around, every cold, flu, lurgi, bug everything. Each thing would really knock me out - I'd be off work for at least a week. (Since starting the MP I've had 2 colds each of which resulted in only one day off.) I also never knew when a random 'CFS crash' would hit.
But MP herxing, is a lot more predictable and manageable. In each of Phase I and Phase II, I've been able to identify a pattern of herxing and typically know when the worst of it is going to strike (though are always some unpredictable ones). This helps me plan my work week - put the more stressful things on non-herxing days etc. Most of the time this works out pretty well. Of course, I have plenty of tools to manage the herxing as well when I need to. (Nothing as effective as that was available when I was having 'CFS crashes').
Best of all, on the MP, I've been improving!!! I'm now up to about 28 hours/week (and it's not a stretch).
With respect to light, this was pretty much a no-win situation in my current office. The whole place is bathed in light. That being said, I did already fortunately sit in probably one of the darker places (albeit that's not very dark). So I get my coverage through clothing. Always completely covered except for my hands and head (have zinc on my face). Always wear the NOIRS. At first I was self-conscious but when I realised how much relief they brought me from sore eyes and headaches, it didn't bother me after that. And I was pleasantly surprised how supportive most people have been. Only one person has really had a go at me.
So that's my experience!
regards, k
PS I also definitely recommend ALWAYS ALWAYS having spare meds with you.
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ME/CFS severe menorrhagia & dysmenorrhoea anxiety depression paxil hydralazine Ph1Oct07 25D50Jul07 25D23Oct07 25D13Jan08 NoIRs cover-up low lux home lite exp r/t to work Ph2Feb08
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Kas
Member
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Posted: Mon Jul 7th, 2008 01:10 |
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I have always worked whilst on the MP (for 14 months straight now).
I am a high school teacher and I have not missed one day for illness since starting on the MP last June. In fact, I have never stayed better - no more sinus infections and even when I had a kid with TB in one class, I had no need to worry.
My school is brightly lit with flourescent lighting, so I wear my indoor Noirs in the classroom most of my day, if not all of it. I tell my students I have to wear them for an eye condition, and they have all become very used to me with them on. In fact, if I take them off to see better, I am quickly reminded about wearing them! Fortunately, most of the classrooms I work in, have no windows, so I rarely have to worry about natural light, but when I do, I cover up with clothing and two layers of Kabana cream and have no problems. To cope with a full work load, it is necessary for me to take the MP meds at a much slower and even more drawn out rate than most ( I extend the antibiotics schedule) and even at lower dosages. So, I might be on the MP much longer, but as long as I am healing at a tolerable rate for me, that is not a problem. Ten years on the MP is a lot better than 10 or more years on steroids and other cytoxic drugs which give me no chance of being cured.
I have very low BP, so I always keep a bottle of water with me and something salty in my bag if I start to feel weak or dizzy, but most importantly, I have a stash of 20mg and 40 mg Benicar in my purse at all times for that extra boost. I take my Beni every 4 hours during the day ( every 8 at night, for good sleeping), and that has made the world of difference, so I am now on this dosage permanently. It is so worth taking the extra pill a day, which allows me to really cope. I keep a wide brimmed hat in my car and an extra hat/ cap in my bag at all times, plus I have gloves in a pocket, should I have to go outdoors and for driving. I try never to up my dosages until a Friday so that I feel better by the Monday. If I have tacchycardia, which does happen, I sit down and take an extra Benicar and it soon settles. I have taken on a lesser load lately and often come home to rest and regain my energy, if I am tired out.
My sarc is not something I have ever discussed with my employers or co- workers. I am able to be on the MP without their knowing, and that works for me. I do not want to be defined by my illness or even jeopardise any advancement possibilities because of it. All they need to know is that I am sun sensitive and have an eye issue which is being fixed up.
I only have about a 15 minute drive each way to work, so my light exposure is pretty limited commuting. I am also very fortunate to be living in a country with long, cold winters, as for many months, I am well covered by thick clothing outdoors and have little sun/bright light to deal with during the times I have to be outdoors. As I am off for most of the heat of the summer, I can be indoors in a low lux environment for the most part. If I do venture out for longer periods, I make sure I am never more than four hours from my next benicar and have not had light problems.
Due to family circumstances, I have had to travel really long distance twice this year ( think 20+ hours) and with my Benicar, Noirs and Kabana cream, I have managed that, too.
So, yes, you can manage to work on the MP if you need/ want to. It just takes a bit of planning and a lot of determination to lead your life whilst on it.
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Sarc Dx by splenectomy 03- Lungs, lymph nodes, liver. Non MP meds: natural progesterone cream three weeks a month; cal/mag; probiotics; milk thistle daily; cranberry caps prn; quercetin prn.Noirs outdoors and under flourescent work lights, Spectra 3 cream
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cathys2007
Member
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Posted: Tue Jul 8th, 2008 15:57 |
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According to the responses, working while on MP is manageable. As indicated by some member experiences; herxing is predictable and with a little planning, determination and faith; I will be able to continue working as well. Support from an employer, seems to be a consistent response, luckily I have a great boss. I plan to "take it slow", and have an extra supply of meds, salty food, and water. The windows at work are covered and I have my NoIRs, so I will make sure I am covered in the car. A hat is a good idea.
Kas.. congratulations on not missing a day of work!
Thanks everyone,
Cathy
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Dx Sarcoid-lymph node biopsy/neurosarcoid 12/06/ FMS and IBS 25 yrs/ Narcolepsy/ Osteopenia/ Gerd/ Raynauds/ fatigue, brain fog, muscle pain, fevers, migraines/D12548, d2526/NoIR jan08
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Dody
Moderator
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Posted: Wed Jul 9th, 2008 04:34 |
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Hi Cathy,
I have worked full-time throughout most of my year and 5 months on the MP. I was very worried that I would not be able to, and I feel very fortunate that I discovered the MP before I was too sick for it to be possible. Working while on the MP is not an option for everyone. Everyone's disease is different, and you will just have to discover what is possible for you.
I should say that I am probably having to progress more slowly on the protocol because of my working. However, I am feeling so much better that I don't mind that at all.
Not to work full-time would have meant that we would have had to sell our house (in a bad housing market) and find somewhere much cheaper to live. That, and the fact that I do love my work, also that I am only a year from being fully vested in my pension, were my inspiration to get back to work after my two months leave that started with a weeks hospitalization a year and a half ago. I had a setback a year later (fell down the stairs and injured my back pretty badly), and was out for another month. But I'm back, and I somehow manage to keep getting up and ready for work every morning.
I am fortunate that I live only five miles from my workplace, have a shady route that I can drive, and have a full hour for lunch. The first year, I rested with my feet up every lunch hour. Nowadays, I walk laps in the basement for about 20 minutes most lunch times. I am only gone from 8:15 to about 5 every work day.
Getting enough rest is essential. If I am especially tired when I get home from work, I lie on the couch for awhile, and may wind up sleeping for an hour or two before fixing supper.
I've had to do some planning ahead. It takes discipline for me to go to bed early enough on work nights. I do love staying up until really sleepy, then sleeping late. That's still possible on some weekend nights. (Oops, this is a work night, and I'm posting at 12:30; yah, discipline. I got a ton of sleep last night and last evening.)
Cooking ahead (and doing laundry before I'm running out of clean clothes) has been another important strategy, as I can't really know when I may be too tired to feel up to cooking supper. Also I always need leftovers to take for lunch the next day. We have been very fortunate to have friends who have networked to bring us meals during times that we were just too over-stressed to handle much shopping and cooking. But most of the time, I just cook larger batches of simple meals. I've learned to be content eating the same lunch for days at a time. Often our suppers are not much more varied.
I have had what I would call reluctant support for the modifications I've had to make to my workspace. The custodian was very supportive and removed two of the three fluorescent tubes in the light over my desk. I also needed to block off the light from my beloved window. We're not allowed to attach things to the walls. After too many months of trying to make do by keeping the miniblinds closed, I finally found a big bulletin board that really blocks the window, waited till everyone else had gone home, and propped it up. Of course, I have darkened my computer screen quite a bit.
In general, I've found that not asking permission, not discussing, and just doing what I need to do to protect myself and my progress on the MP, works best.
I could have made my own work corner even darker, but I needed to be able to survive the more brightly lit places I had to be, including frequent walks to service customers at "the window." (I work at Town Hall in my small town.) I found that baseball-cap shaped caps have enough brim to keep the glare off my eyes. I've never been a hat person, let alone a baseball-cap-with-professional-clothes person. But now the caps, NoIRs and dark color schemes are just part of me. I've gotten pretty callous about what folks think of them. (The cap also adds to the protection my sun hat and dark scarf give me outdoors.)
I've never been a lipstick person either. However, I've found that without people being able to see my eyes smiling, I need to smile broadly with my mouth, and if I can remember to use some tinted lip balm, the smile is more visible. (From the child I used to be who was always being reminded to smile, I have become someone who is frequently told how nice it is that I am "always smiling.")
The MP is a journey filled with surprises. I hope that continuing to work is possible for you, as I gather that is your hope. The MP does require one to follow the serenity prayer: to surrender to the things you cannot change, to change the things that you can, and to discern the difference between them. I know you will find the way that is right for you Cathy.
Warmly, Dody
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Lyme Arrhythmia Vertigo Meningitis Bipolar lithium tylenol cover up outside mod low lux inside ModPh2Jul07 Ph2Apr08 Ph3Feb09 D25 Oct09 7 Mar10 4
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cathys2007
Member
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Posted: Sat Jul 19th, 2008 15:51 |
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Dody,
Thanks for your words of encouragement.I'm a planner so planning ahead will come naturally. Your suggestions will help me to plan. I don't cook much. My husband is the cook of my family, so I will pass your suggestions for meal preparations to him. Cooking ahead will help him since he has extra duties due to my illness.
I've never been a lipstick person either. However, I've found that without people being able to see my eyes smiling, I need to smile broadly with my mouth, and if I can remember to use some tinted lip balm, the smile is more visible.
Thanks for the smiling idea. I've been bothered that no one can see my eyes smiling. I've removed my NOiRs on occasion when I felt the other person is uncomfortable speaking to me. I will try to broaden my smile with my mouth.
All the best,
Cathy
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Dx Sarcoid-lymph node biopsy/neurosarcoid 12/06/ FMS and IBS 25 yrs/ Narcolepsy/ Osteopenia/ Gerd/ Raynauds/ fatigue, brain fog, muscle pain, fevers, migraines/D12548, d2526/NoIR jan08
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John McDonald
Foundation Director
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Posted: Sat Jul 19th, 2008 16:17 |
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I've removed my NOiRs on occasion when I felt the other person is uncomfortable speaking to me.
I have made it a practice to always remove my NOIRs briefly when I meet anyone, even a cashier in the market. It is just for a moment to make eye contact. If I feel it is warranted then when I put them back on I explain that they are medical and that is the end of it but often the explanation isn't necessary. Everyone wears sunglasses here. I wish everyone removed their sunglasses when greeting. Sometimes in a long conversation I will remove them again briefly when I want to make a point or to reassure or whenever I think appropriate. I don't know if they appreciate it but it feels right to me.
-john
____________________
RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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Deb Grabetz
Moderator
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Posted: Mon Jul 21st, 2008 11:48 |
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Dody wrote: Hi Cathy,
I have worked full-time throughout most of my year and 5 months on the MP. I was very worried that I would not be able to, and I feel very fortunate that I discovered the MP before I was too sick for it to be possible. Working while on the MP is not an option for everyone. Everyone's disease is different, and you will just have to discover what is possible for you.
I should say that I am probably having to progress more slowly on the protocol because of my working. However, I am feeling so much better that I don't mind that at all.
I have had what I would call reluctant support for the modifications I've had to make to my workspace. The custodian was very supportive and removed two of the three fluorescent tubes in the light over my desk. I also needed to block off the light from my beloved window. We're not allowed to attach things to the walls. After too many months of trying to make do by keeping the miniblinds closed, I finally found a big bulletin board that really blocks the window, waited till everyone else had gone home, and propped it up. Of course, I have darkened my computer screen quite a bit.
In general, I've found that not asking permission, not discussing, and just doing what I need to do to protect myself and my progress on the MP, works best.
Warmly, Dody
Hi Dody,
After reading your post about the effort you have put into keeping your job and working, it reminded me of working through my neuro flare 18 years ago! It reminded me of the strength it took to push myself each day to keep my job. I had no dx but was very ill, very light sensitive. I also, removed fluorescent bulbs above my desk, "wanted" to wear a ball cap as that always made me feel so much calmer.
It is a *huge* effort to be doing what you are while ill, along with being on the protocol. I could not help but send you a note of support! I found my work very satisfying at the time and think it helps through a very rough time when one can work....but regardless, it is still a day to day demand...Take care...thanks for sharing your courage and strength with us all!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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Michele MBK
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Posted: Tue Jul 22nd, 2008 04:30 |
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I've removed my NOiRs on occasion when I felt the other person is uncomfortable speaking to me.
This has been a wonderful tip! I've now tried this out with store clerks, students, friends, etc. and that little bit of eye contact time does put people more at ease! Thanks!!!!
Michele
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Lyme / RA 125D30 25D16 Advil / Vicodin or Celebrex low lux home NoIRS cover up Ph1May08 Ph2Sept08 May 09D25:6
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eClaire
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| Location: | Virginia USA |
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Posted: Tue Jul 22nd, 2008 23:19 |
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| John, I appreciate the tip as well. Although I could not have done that for the first 18 months, I am now in the position to do that and so will take advantage of it. Thanks again! Claire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Dody
Moderator
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Posted: Wed Jul 23rd, 2008 01:52 |
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Thanks Deb for your kind words!!
I've just gotten back from an unusual required evening meeting, which I survived. But man, I was so nervous and worried before, I couldn't eat any protein at supper. It was a public hearing, televised, and I would be asked questions that could not be predicted with any accuracy.
What if the noun gremlins stole the words I would need? What if my tremor was real obvious? (Well, it kind of was, but I pretended oblivion and hopefully no one focused in on the tremor.) Worst of all, what if my reduced ability to think on my feet--never spectacularly good--left me speechless or blathering. And my boss was there, too. I was a wreck before.
But I got lucky. I'm on day 8. My thinking worked ok. I was able to listen to questions, understand them, and answer them--it was amazing! I didn't embarass my boss. I am sooo relieved. And then it was sooo nice to read your validating words about my still-working-every-day road.
One other happy milestone to report, unrelated to work: My hair is coming in much more brown than grey, more brown than in a decade or more. I'm 63, and my hair color's coming back!! Yay, MP! I've been promising our 24-year-old son that I expected to be getting more healthy on the MP than I've been in years. I believed it--but now I REALLY believe it.
Thanks for your frequent upbeat contributions. Don't forget to post when you're feeling really challenged, too.
All best, Dody
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Lyme Arrhythmia Vertigo Meningitis Bipolar lithium tylenol cover up outside mod low lux inside ModPh2Jul07 Ph2Apr08 Ph3Feb09 D25 Oct09 7 Mar10 4
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Yomi
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Posted: Thu Jul 24th, 2008 05:47 |
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I really appreciate everyone's post about working while on the MP and the challenges being faced. It is really informative with regard to the possibilities.
I was diagnosed with sarcoid in 2001 and have managed it considerably well, although after coming across the MP I realized I have been managing it using the wrong medicine/methods (prednisone). My symptoms have fortunately been painless; uveitis, skin granuloma, enlarged lymph nodes and recently (June 8th), slight paralysis/neuropathy on my right side (arm and leg). I have an appt to see a Dr. that has dealt with MP patients (finally found one) at the end of August. I am hoping when I start the MP I'll be able to manage the herxing and continue working like most of you.
Currently my wife and I have been combing through the website to get as much information as we can by priority. Any info you can provide for a newbie would be greatly appreciated.
Once I get all my tests done I will be posting more often and of course have my signature line done.
Thank you all again,
Yomi
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HeaCat
Registered
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Posted: Sat Aug 9th, 2008 03:00 |
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Hi Everyone,
I recently graduated from law school this past May and just sat for the NY and NJ Bar exams. I start work on September 22nd and am very worried that I will not be able to continue on the MP while working. Because I am working in a stuffy law firm which is an unforgiving corporate environment, I really don't want to draw attention to myself. I thus far have not had issues with light sensitivity and don't want to wear NOIRS at work. I always wear them outside and would have a 30 min commute to work each way.
I cannot afford to loose my job as I have significant student loan debt to repay. I started the program prior to taking the bar exam and am currently on week 2 of 25mg of mino. I hope to be at 75mg of mino by the time I start work. After that it seems like taking it slow would be a good idea.
I have read all of the post thus far and was wondering if anyone works in a corporate environment and how they have dealt with not telling their employer. I really don't want them to know unless I MUST tell them. I agree with the other poster that I don't want to be defined by my illness. I also don't want them to use it against me for any reason.
Thanks in advance for your comments and advice.
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Sarc lungs, pulmonary hypertension, avoiding sun, vitamin D, bright lights, ordering NOIRS, pending Benicar, no D-test yet
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John McDonald
Foundation Director
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Posted: Sat Aug 9th, 2008 19:58 |
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What if you were diagnosed with cancer yesterday? How would that affect your desire to speak with your employer? How would that change your ideas about your job, your debt, your family and your health? This is similar. The answer to one will inform the other. This is a very, very serious condition that you are recovering from.
Maybe you can do stealth MP. I can sort of shade my colleagues from the worst of my own MP but not all of it. I have been a good employee while on MP but not a model employee. I have elected to keep a job that I find a bit stifling and a bit career limiting because it gives me the freedom that I need to deliberately elicit herxing. But herxing is only barely predictable. I sort-of know how my work week will proceed, herx-wise, but as I clear some tissues and organs and move on to others I am continually surprised by new symptoms and continually need to adjust. Sometimes I have to call on my colleagues to cut me some slack. Sometimes I can make it up to them and sometimes I can't. I think an ultra-high pressure NY law office might ruin the health of a whole person. You may have to make some choices here. Good luck.
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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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eClaire
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Posted: Sat Aug 9th, 2008 20:07 |
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John,
Thank you for writing what I would like to write, but was unable to put together. I was once a corporate attorney and I an tell you that in the last year of working my mind compromised my legal competency. Herxing will do that (just as the illness will). Ethically, competence is what an attorney owes a client.
HeaCat, your health is far more important than any job (that is, your life is more important than any job...I let my job run me straight into total disability). I hope you realize this and opt for wellness and a longer life. As John says, "You may have to make some hard choices here." And I think he was being a bit soft by saying "may." That is, if you value your health.
Hope you do what you need to do.
Claire
Last edited on Sat Aug 9th, 2008 20:07 by eClaire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Deb Grabetz
Moderator
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Posted: Sat Aug 9th, 2008 20:18 |
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Hi HeaCat,
I'm curious to your age?
I worked in a corporate environment (not law, but Sales) back in 1990 when I first flared with my Sarc and was full blown neuro symptomatic. It was difficult because I did not have a dx for Sarc and no doc could tell me what was happening. I continued to work dizzy 24/7, light sensitive to the bright fluorescent lighting, and many other neuro problems etc but I managed. I'm sure now that my age played a big factor in me being able to do so, as this second time around I was flat on my back.
If you are able, I would encourage you to work. It does the soul good and seems to keep one pushing. In a funny way, I sometimes think I led a fuller life not finding out about this Sarc until I was 50, it has *derailed* me this time around by never being treated properly for it, until the MP! From an emotional standpoint if you can pursue your dreams and work through the MP, slowly as well, it could be a win-win for you! Again, this is only my thoughts from having experienced this at a young age and having better perseverance to work.
In the end, you will be the only one who will know your tolerance levels. Without the treatment of the MP though, your health will continue to deteriorate as did mine!
Pray! Your answer will come! Deb
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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