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Posted: Sat Oct 30th, 2004 05:22 |
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How will the MP affect my life? Can I continue to work?
Some people are able to continue working while they are on the Marshall Protocol. It's a very individual thing which depends in part on the severity of your disease symptoms, how well you are able to control the immune system reactions (immunopathology), your level of photosensivity and your ability to accomodate necessary light restrictions at work. Please read Photosensitivity During Recovery from Th1 Inflammatory Disease
High vs. low 1,25-D
There is no correlation between the D metabolites results and the immune system reactions to be expected. Everyone needs to be cautious when starting the MP and follow it exactly to avoid serious immune system reactions or serious symptoms due to sun/lights exposure. See If my initial 1,25-D is low does that mean the immune system reactions won't be severe?
The initial few weeks tend to be the roughest with an increase in symptoms due to a rapid fall in the 1,25-D level causing many hormonal adjustments. If you can take some time off from work during this time, I think you will be glad you did. These symptoms are usually neurological in nature and include increased fatigue, headache, sleep disturbances, mood changes and photosensitivity. They usually subside in 2-3 weeks. See I just started Benicar. Why do I feel worse? What should I do?
When your Benicar adjustment symptoms are minimal, you will start minocycline every other day. This will cause immune system reactions (immunopathology). Usually these symptoms are similar to your current or past disease symptoms. But people have been surprised by entirely new symptoms. The intensity of the immune system reaction is an unknown at the start of therapy. A high 1,25-D suggests that you will have more severe reactions but this isn't true for everyone. Even though minocycline starting doses are very low, some people have had severe reactions. It is best to anticipate this. In the first months of the MP, you will be learning what your immune system reactions feel like and how to adjust your dose of minocycline to dampen the reaction to one that is tolerable. See How To Identify Immunopathology (Herx)
The beauty of the MP is that you can adjust your dose of antibiotics to avoid strong immune system reactions at the times when you need to work or to feel better for some other reason.
Limiting light exposure
If your work involves natural light exposure, you may need to make some changes. Limiting natural light exposure is often essential and this restriction may be necessary for some months. Talk with your boss to see if accommodations can be made for you, if necessary, under the disabilities act. If your job exposes you to some natural light you can expect to feel worse and may not be able to continue for that reason. For some people, it may be necessary to make a job change in order to regain their health. But many have been able to continue working. See Why does exposure to natural light increase symptoms?
Lighting at work
Apart from the fluorescent lighting: in some indoor situations, be aware also of natural light thru skylights and windows, in which case you may be able to come to some new arrangement with your employer regarding protecting yourself by moving your office or covering windows, etc. or you will need to protect yourself as well as possible.
Natural light > protect skin and eyes..
Artificial light > protect eyes / not skin..
If you feel well enough to work, you should be able to follow the Marshall Protocol while continuing to work. Take as many precautions as you can with natural and artificial light exposure to minimize symptoms from light exposure which could make it difficult to continue the MP.
Benicar
Increasing Benicar in anticipation of light exposure may help. "I used to make sure that I was never more than 4 hours from my last Benicar whenever I had to go outdoors. Then, after the exposure, I needed to keep the 4 hour going for 12 hours after the final exposure. Beyond that I could slip back to normal dosing." ..Trevor..
See What precautions should I take when I must go out?
Rest
Many folks report that adequate rest is the most effective way to tolerate an increase in symptoms due to immunopathology. If possible, scheduling a regular rest and food breaks and allow time for increased rest when you are at home after work and on our days off. You have embarked on a serious treatment plan and need to respect the profound changes that are happening in your body.
You can still have a life while on the MP. But extended outside activities that are recreational only should be postponed until you are well. Think of them as toxic because they could make your road to recovery very bumpy. Many of us have given up treasured outside activities for the short-term recognizing that the benefit of good health is well worth the sacrifice.
Working outside
Meg wrote: "I'm sure you realize that if you continue to work outside, it won't be long before you are too ill to work at all. Since you work for the post office, they should be aware of the Americans With Disabilities Act. With a doctors explanation, they are obligated to accomodate your limitations in the workplace. Surely there are some positions indoors that you could assume? Even then, it may be tough to tolerate a full work schedule at times. But you should be able to modify the MP meds to help you get through most days as long as you are inside."
See also:
Light Sensitivity-basic information
How do I know if I can do this?
Carole's story
(Scroll down for more helpful info)
Last edited on Sun Feb 24th, 2008 21:03 by Foundation Staff
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Aussie Barb
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| Joined: | Thu Jul 22nd, 2004 |
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Posted: Wed Nov 2nd, 2005 22:15 |
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JRFoutin: re Family commitments.. @ How do I know if I can do this?
(filelink)
Hope you are not overwhelmed. I have to take a son to school and I just keep gear next to keys that I can throw on quick (hat, scarf, outdoor NoIRs and gloves). Some places in my house stay dark and some are designated for light.
Little preschool grandchildren that live with me right now sit and work on their activities close to directional low lights pointed away from me--well away from my area-- but great for them (light diminishes at distance, lux meters may be helpful as you set up centers for activity).
Get the little ones their own pair of sunglasses and hats so they can dress up when you do! It will help them get used to the changes, and they can remember this chapter of life as being fun. Take a nap when they do to help you heal. A Mom's light and love are always better than the sun, any time.
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JRFoutin: to a Surfer any chance of success on mp in the sun?
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Posted: Thu Oct 12th, 2006 23:44 |
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(filelink)
Members share their work strategy experiences
Working while on the MP
-I still work full time and have all of the family responsibilities."
and "I can handle all of the physical symptoms a lot better than losing my mind."
You may find some aspects of mental clearing that must occur to get you well a little challenging to say the least. Some of these herxes are a specter of things to come if the MP were not used right now. Not pretty, either.
Delegating home responsibilities to family members, even small repetitive tasks you feel are yours alone, is a better idea than stopping the MP (benicar and mino). You may want to look at it this way: If you weren't there to take care of the task at the point in time when the disease mandated it, they'd have to assume those responsibilities anyway. Better to help now when they can look forward to your return to duty, than waiting until it is too late to change the outcome.
You are working likely for the same reason many of us do, so you and your family can live. You also need the MP to have a life. So, pad both those efforts by dropping any load you possibly can and delegating everything else.
On weekends and days off, if the choice comes up to rest or frolic with family (or anything that remotely resembles work), choose rest -- with your feet up. ~jrfoutin
-I have worked 3 days a week before and during the MP. I have taken minimal sick leave due to IP/herxing. In July/August this year I had the Flu for the first time in my life and I had 2 weeks off on sick leave and then went back for ½ days the next week. After that I was still lacking in endurance but managed my full hours. This is the only ‘relapse’ I have had since commencing the MP. Because my endurance is now so much better, I am actually able to work extra hours and have TOIL (time off in lieu) later when it suits me! Pre-MP I struggled at times to make the day out and I took sick leave (in hours) so that I could finish earlier in the day. ~Vicki SA
Supportive employer
I spoke with my supervisor and she has said there will be no problems with my wearing my NoIRs on the job and she will order me a long sleeve company polo to wear under my uniform so I will be in compliance with dress codes. She also wants me to evaluate the time of day that the sunlight hits the windows my kiosk is next to so she can schedule me to leave before that time. She is seemingly very supportive and wants to do everything she can to keep me on the job. I also spoke with her regarding the promotion I am being offered. I told her I am not ready to take on the extra hours and responsibility at this time since I need to focus on MP and getting well. She was understanding and says it will not hurt my future chances for advancement. I can see why Publix has been rated in the top 100 copmanies in the USA to work for every year for the past 10 years!
My husband is glad they are so willing to work with me but still cautions me that I may have to give up the job due to the illness and Herx reactions. He wants me to get better and is willing to do whatever it takes. ~shamoness
A decision to quit work
-I noticed I was still working when I last posted. I found that I was over taxing myself and after discussing with my doctor and family I quit my job. I was standing all day in front of a window and would find I was sunburned at the end of the day. weird for me as I never before burned in my life!
I am glad I made the decision although it was a hard one. I feel much better. I am able to rest when I need to. I can pace mayself. And I don't have to go outside during the day very often. The money I was making was very minimal and I was not eligible for benefits for at least a year. My health is more important.
For those in similar situations I would suggest they seriously weigh the pros and cons of such a choice. I know I did what was right for me. But every situation is different and what is best for one could be different for another. ~Beth
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Foundation Staff
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Posted: Mon Jul 16th, 2007 20:33 |
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[filelink]
Letter of explanation to employer
Some folks are asking me why I am wearing sunglasses indoors, so I thought that I better put everyone's concerns of drug abuse to rest. (ha ha) I have a disease (politically correct term: condition) called sarcoidosis, a TH1 'autoimmune' disorder. This condition is not contagious. Although it can be very troublesome for me at times, I have no functional issues at work.
Dr. Trevor Marshall has identified the causal agent and its mode of proliferation. He has discovered that photosensitivity symptoms are exacerbated by IR, UV, and blue light of any intensity. Fluorescent lights are especially troublesome because the large amount of blue light that they emit so you may have noticed the lights out over my desk.
I was diagnosed with sarcoidosis Christmas eve of 2000. The disease currently involves my lungs, and lymph nodes and can progress to involve any or all of my vital organs, eyes, and brain (not so vital I know…). It is serious if I don't stop it. In order to halt its progress, I have to wear special glasses indoors and out. These glasses are made to order and so take some time for delivery. I am expecting them within 2 weeks so I have been advised to wear my sunglasses until they arrive. I have to wear them indoors and out. I apologize if they cause anyone discomfort, believe me, it's hard for me to get used to as well.
Once I get the glasses, this will effectively stop the photosensitivity symptoms if I stay out of sunlight, bright light, etc on my skin. Then I will begin a regimen of Benicar, which blocks inflammation, and later Minocycline, to destroy the causal agent. This will take up to 18 mos. depending on the extent and variety of intracellular bacteria to be killed. Then I will be cured. When I am further along in the treatment and less photosensitive, I won't have to wear silly glasses. I will be a 'normal person' as _____ puts it. The glasses that I am getting are also safety glasses, so no concerns for PPE. This treatment is not through alternative medical sources. (I've tried that already).
I have been through pulmonologists, cardiologists, ophthalmologists, and various other Doctors who are unable to help me because this treatment is so new. (New in the medical time sense) The treatment has cured (induced remission) in many people and several hundred are in treatment now. The treatment will not prevent me from working or performing my job.
I do not want anybody to treat me any differently than before. Just think of my weird glasses as PPE. I can tell the difference within a day if I don't wear them. I experience migraine, shortness of breath, severe pain in my extremities, and blurry vision. There are other symptoms associated with the disease depending on organ involvement and proliferation, but I will not bore you with them. Suffice it to say that when I am careful, I do fine.
I was afraid to tell people about this condition for fear that they might not want to work with me or not want me to work here at all. Now that I cannot be discrete about it because of the glasses, I had to explain. So there it is. ~bookdad
Note: PPE means personal protective equipment
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