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Kas
Member
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Posted: Mon Jun 9th, 2008 00:50 |
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Hi fellow MP'ers,
I am faced with a very tough situation.
My dear mother is in a critical condition due to end stage lung disease ( TH1 disease treated with steroids etc for 12 years). There is nothing more the doctors can do for her and she does not want to be intubated.
So, I will be flying 23 hours to see her, possibly within the next couple of days, when flights have been arranged etc. I will be going on my own and want to stay on the MP, if possible. I have recently bumped up to my phase two beginning meds. I feel that stopping and starting is too hard, and that the Benicar, which I take every four hours during the day, has made a big difference to the way I cope with the MP, especially during my workday. I have now been on MP drugs for exactly a year with no breaks, just adjustments of the abx. I fear that stopping the MP in its entirety may cause my immune system to keep on killing the bugs, but without the organs being protected by the Benicar.
I need to know if any of you have been able to handle the anxiety and emotional turmoil one faces in these situations and been able to stay on the MP. I will be in a city which is 6,000 feet above sea level, so it is always harder to breathe there, even for folk without lung issues and low BP. I know that I am facing an extremely stressful time and am not sure how long I will be away from home. I do have at least a three month supply of Benicar ( enough to take it every four hours) on hand, and also enough abx, should I stay on them, too. Also, is there anything I can take, which will not interfere with the beni/ abx, should I become very anxious and overwhelmed by my emotions?
Thank you all so much for any input here.
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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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PaulT
Member
| Joined: | Fri Feb 25th, 2005 |
| Location: | Sydney, Australia |
| Posts: | 290 |
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Offline
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Posted: Tue Jun 10th, 2008 00:33 |
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Kas
I've been through a couple of periods where family stress has been an issue.
Overall you've got to try and keep things tolerable. I've come to think of it as a formula.....
What i can cope with = IP + Family stress + light exposure
So if stress goes up I try and lower IP or LExp.
Remember that reducing IP by lowering meds or taking extra Benicar is not going backwards - just going forward a little slower.
Get as much rest as you can too
Paul
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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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Kas
Member
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Posted: Tue Jun 10th, 2008 01:48 |
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Thank you so much for your valued reply, Paul. What you have written makes complete sense. I am already taking beni every four hours during the day, so perhaps I will have to sneak an extra 20 mg in, as needed.
I will try and rest whenever I can, starting on that horrendously LONG flight. Pity I can't have a glass or two of wine - it affects the old sarc-y liver, I would imagine!
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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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Chris
Support Team
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Posted: Tue Jun 10th, 2008 03:40 |
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Kas,
This link suggests a few things to help you notice things like anxiety that might not feel like herx at first.
What is neurological immunopathology?
This one is more specific.
How can I control my anxiety and depression?
And this one worked for me ...
When and why should I use Valium?
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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Juanita
Member
| Joined: | Thu May 3rd, 2007 |
| Location: | Alberta Canada |
| Posts: | 529 |
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Posted: Tue Jun 10th, 2008 18:42 |
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I am sorry to hear about your Mom, Kas. How very sad and painful for you. I wish you well with your flights and your visit, but also with your heavy heart.
What I've been finding is that simply doing your best while keeping up your Benicar barrier is more than enough when Life throws curves balls. It takes a while to kill off significant levels of bacteria, so time is our friend. Slowing the pace of your treatment is still doing your treatment. Turtle and the hare, eh? We'll still get there.
Remember to keep your liquids and your nutrition up. During stressful times, we often drop that self care ball first. We'll remember to take our pills but we won't respect the rest of the body's needs. Healthy food and liquids and as much rest as possible, including down time such as meditating or listening to good music. Do you have an ipod for the flight?
As Chris suggests, Valium can be invaluable. I've found that small chunks of Valium take the edge of intense emotion without knocking me out into a slumbering stupor. Brand name Valium snaps apart very easily so you can take wee amounts and gradually work up to where you are calm but still functioning. When I went into the Big City for my first test of how far I've healed, in my first aid kit was extra Benicar and Valium. I also took mino that morning as, for me, mino blunts the edges of my reactions to chemicals.
I don't know the legalities of meds on flights, does anybody else know? Or you can ask your travel agent or phone the airline you are flying with to find out. You also might want to pre-order your low carb/ high protein meals in advance. Anything that nurtures you makes this journey easier, eh?
Much good luck to you, Kas.
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
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Kas
Member
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Posted: Tue Jun 10th, 2008 18:59 |
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Thanks, Chris for the links, and a big thank you, Juanita for your input and support.
I will certainly ask my doc for a valium script. I usually like to be alert when I am flying alone, but a wee bit should be fine for the flight. I am quite certain I will need to take it whilst I deal with the tough stuff over there. Tiny doses sound good, as all drugs react quickly with me. I drink so water on aircraft,that I quickly become a washroom critic!
My hope is to keep up the Benicar blocade as I have it now. I do well on every 4 hours during the day, and I have t-r capsules for the night to allow me to get my 7 hours or so sleep.
I believe you are allowed to take any prescription meds on board with you. As long as the bottles etc are clearly marked with your name etc, there is no problem. I have travelled quite a bit on the MP, with my Benicar in my overnight bag, in my purse and even in my pockets, so that should be fine.
Many thanks to all of you, again.
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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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Carricol
Member
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Posted: Mon Jun 16th, 2008 22:52 |
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| Kas, So sorry to hear about your mother. One of the things that seems missing in the discussion above is lighting. When one leaves their home one looses control of the lighting situation. You may find this to be the most challenging element. You may not have complete control over the lighting situation you will need to deal with.
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Sarcoidosis 125D38 Ph1 Nov07, fluoxitine Lithium Synthroid 5-HTP tyrosine, NOIRs lite exp r/t commute cover up, Ph2 Jan08 25D9 Feb08
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