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Leesa
Member in Phase 3
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Posted: Sun May 21st, 2006 04:36 |
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I am on finishing up 5 months on the protocol and have seen improvement on my sarc. Especially on my eyes, I had uvitus (eye inflammation) last year about 6 times, or every time I tried to wean off steroid eye drops and now I have been uvitus free for almost 6 months and I am and have been off of steroid eye drops for about 2 months! This overjoys me. I also have seen NO flair ups on any of my other prior sarc related symptoms like face swelling (parotid glands) or grandulomas on my arms. I am herxing nicely J (If you can say that) and very glad to be getting better. BUT…I, until the past couple of weeks, have been cave dwelling in my very dark house almost all the time. I am finally accepting that it will take me a while to get better (or at least a while longer than I had myself thinking at first), and at the same time… I am finding that I am having a hard time watching my family do stuff without me much of the time. I have a wonderful husband and three small kids (I am a stay at home mom) and we used to lead a real active (outdoor) life with lots of travel. I want to find a way to do the treatment (successfully) and live life a bit more………….. Does anyone have hints or tips on what they do to make this treatment more bearable? THANKS 
Leesa
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Sarcoidosis(12-04 biopsy):Uvitus-eyes, Swollen- Parotid Glands, Granulomas-arms, some joint pain & fatigue; Started MP 1-06;Phase 2 03-06 Phase 3 07/06 NO MORE Eye Drops! D test 11-04:1,25D-70 & 25D-46;(9-06)25D-17 (1-07)& 16(2-2008)
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jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
| Posts: | 3880 |
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Posted: Sun May 21st, 2006 16:41 |
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| I haven't even got to a year yet either. Some days I'd really like to go out and play too.
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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katydid
Member in Phase 2/3
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Posted: Sun May 21st, 2006 18:02 |
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Ditto to what both of you said, and I'm at about 5 months. I find it helps to go outside at night as much as possible. I've always liked stargazing, anyway! I'm also trying to learn some new skills. We'll see how successful that is!
Kathy
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CFS.D's 12/05 25D-7, 1,25D-19,not Quest.Vicodin 10-325 1 PRN.Flexeril 10 mg qday.Westhroid 60 mg.12/27/05 Avoid sun,D Noir's.
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Jill T
inactive member
| Joined: | Mon Dec 27th, 2004 |
| Location: | New York USA |
| Posts: | 437 |
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Posted: Sun May 21st, 2006 20:34 |
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Leesa,
I have 3 kids too, and wish that there could be more family activity outside. But, one of our traditions that we started last summer, and we did on Mother's Day, is to build a fire in our outdoor fireplace and roast marshmallows together. We got the fireplace at Target a few years ago. We have a really good time sitting around and chatting by the fire. Lots of good stories come out. My 16 year old even seems to enjoy it (as long as his friends come, too). I cherish every moment of it, and sometimes just stare at the sky for minutes at a time! I think this year I'm going to get some of those cute lights on a string for the deck, too. I've seen them in various shapes and sizes. I think that will make my outdoor time more festive, too. Hope this helps. Have fun!
 Jill
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CFS/ChronicLyme Babesia headaches fatique aching chest pains arrhythmia sob paresthesia GERD dizziness depression years of amox for tonsils| 12/04 25D=23,1,25D=77, 8/05 25d=21.6, 10/05 25d=8| probiotics magnesium PH I 2/05, phase II 3/06
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wytnez
Advocate
| Joined: | Mon Nov 29th, 2004 |
| Location: | Texas USA |
| Posts: | 619 |
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Posted: Sun May 21st, 2006 21:39 |
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Hey Leesa,
I have been on the protocol for a year and three months now and though my family is not yet complete, my husband and I led a very active life. Living in Texas, there are a lot of things to do outside. Tubing down the Guadalupe river was one of our favorites. Going to auditorium shores to listen to live music is another favorite. I feel that we are missing out on a lot of fun things. But I don't think I will regret sacrificing certain things to regain my full health.
I was very depressed about 5-8 months into the protocol because I felt like I was missing out on so much. Even now sometimes I get sad when I hear people talk about how beautiful it is outside and what they are going to do for the weekend. We are finding things to do right a dusk and after dark. I know that it is not the same but just remember that avoiding the sun is temporary.
You be able to go back to normal things before you know it. Even though Dr.M says not to bask in the sun (which isn't healthy anyway because of the ozone) you will still be able to do some activities once you recover from sarcoid.
I am so happy that I have been sun compliant. I feel so much better than I did at my diagnosis in 2004 and even though my light sensitivity has reduced quite significantly, I still plan to go the duration. Hang in there.
Saj
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sarc lymph nodes. ph1 1/05,125D 33,25D 10,ph2 5/05,ph3 12/05,125D 21, 25D less than 7
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LeAnne
Member in Phase 3
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Posted: Mon May 22nd, 2006 03:41 |
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Leesa. I have three children myself 19, 17, 15. I feel like I am missing out on their "last years" with me. Before I know it they will be out of the house. It won't be real bad for me this summer because my two oldest will have summer jobs during the day and we can do things at night. My youngest will probably be a little bored, but she has friends that drive and they can do things. I know it is probably harder on mothers with smaller children during the summer months when they are out of school. I would recommend indoor amusements/movies/aquariums/ect....for vacation, or if they want to go outdoors, maybe a friend could take them swimming. If they are older, they can do things with their friends. Since I have been confined, I have really taken up baking and cooking.... This is something kids love to do. I never did much baking before because I never had time. There are also board games or movies. You could even let your children have a friend over. This really helps keep them entertained. These are just some of the ideas that I have tried to do. My children are a little older and so it is not as hard on them. I have felt left out on watching their baseball games though.
LeAnne
Last edited on Mon May 22nd, 2006 03:42 by LeAnne
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Neuro-Sarcoidosis/lungs, spleen, nervous system, skin lesions, 125D66, MP 8/05, Ph1 3/06, Ph3 7/06, NoIRs, low lux home, cover up, 25D9 Sep07
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DNStog
Advocate
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Posted: Tue May 23rd, 2006 20:58 |
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Leesa,
Here's an MP topic that offers additional ideas for coping with the MP this summer.
Ideas For Summer Holidays
Donna
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Sarcoidosis/skin, joints, lungs, nerves, Raynauld's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Wellbutrin, eye vits, melatonin, Milk Thistle, Quercetin, Rx glacier, cover up, low lux h
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Reenie
inactive member
| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
| Posts: | 3373 |
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Posted: Tue May 23rd, 2006 22:55 |
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Hi Leesa,
I have some thoughts for you considering I'm going into my third summer on the MP since I count my first year avoiding light.
One - I've learned to rethink my ideas on outdoor activities. I used to mainly look forward to doing and going outside during the daylight and now I find that I plan to spend the bulk of the midday sun resting or taking care of indoor chores.
I did this while my grandkids were here last summer too, watching movies, taking naps or going to the store (indoors enough) and reserving swimming, dog walking, playing ball until later in the day, right before dark.
Two - Now that I've been on the MP for a number of seasons, I can DEFINITELY see and feel the difference in my light and sun sensitivity. Although for the first couple of seasons I was unable to tolerate much light, I now think I would be able to manage alot more outdoors, in indirect sunlight.
You may want to experiment with your own light tolerance and see how much is not too much for you. You may find that you can do some outdoor activities with your children if you're covered up and in the shade.
Three - It may be helpful to research what other people do for recreational activities with their kids by researching skin cancer sites and/or Xeroderma Pigmentosum sites. I was amazed to find that there are indoor summer camps and there are lots of other folks that have similar light restrictions to us although their reasons are very different than ours.
Camp Sundown is a good example of how some kids spend their summers indoors and may help give you some ideas.
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Margo
Advocate
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Posted: Wed May 24th, 2006 02:57 |
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Reenie,
The Camp Sundown information looks interesting! We should try to get a sponsored MP event there - maybe they would do a program for all ages?
I once looked at the specialty camps for children with chronic diseases, before I knew about the MP. The organization was receptive. However, once I learned about the need to avoid sunlight, I could't see how the program could adapt to people with Th1 diseases.
Margo
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Parent of teen-aged sarcoidosis/uveitis patient on the MP
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Leesa
Member in Phase 3
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Posted: Thu May 25th, 2006 21:43 |
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Thanks all for you posts, I have not replied because I have the flu (me and my daughter). Not fun 
I appreciate the ideas, I will buy an outdoor fireplace, I loved that idea! We just planned a family vacation to the beach, we rented a small beach house with only a few windows that will be easy to cover. During the day, my hubby will take the kids out and I will rest, then we will all walk and play on the beach at night! We will even hire a babysitter one night and go out!
I emailed camp sundown. I will go if my children are not too young....they might be. I also asked them to let me now how out group could have an even there. If I get a reply, I will post it!
I called almost every indoor water park in the US and they all have windows, bummer. I thought that would be a great idea for a family vacation, but if I am a swimsuit....I would need a windowless area.
I just went bowling with the kids and we have scheduled indoor ice skating and roller skating.....it's a start!
Leesa
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Sarcoidosis(12-04 biopsy):Uvitus-eyes, Swollen- Parotid Glands, Granulomas-arms, some joint pain & fatigue; Started MP 1-06;Phase 2 03-06 Phase 3 07/06 NO MORE Eye Drops! D test 11-04:1,25D-70 & 25D-46;(9-06)25D-17 (1-07)& 16(2-2008)
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jillian
Member in Phase 2
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Posted: Thu May 25th, 2006 22:27 |
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Leesa,
Re indoor water park, consider buying some heavy duty black swimsuit material and make yourself a 'body suit' kinda swimsuit. Even if you don't have a sewing machine, it's easy to just stitch it up by hand 'cuz it doesn't ravel. With good fitting eye protection and possibly a visor you could possibly do it!
'til later, Jillian
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PrimryDX-PulmoSarc79,FMS,CFIDS,etc,disabled93. AvoidD/Noirs Aug02. Oct02: 1,25D=42 NTfrzen; Apr05:25D=10. P1 Oct05-Feb06; ModP2C Feb-Nov06; P2 Nov14-Dec06; ModP2BSS Jan-Mar07; ModP2CBSS Mar07-. Noirs & total light control in house.
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Reenie
inactive member
| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
| Posts: | 3373 |
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Posted: Fri May 26th, 2006 02:17 |
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Margo,
If you read their welcome page, you'll see the sun avoidance guidelines for XP are similar to ours. It might be a good idea for more folks to write them with links to the MP info about our sun avoidance requirements.
XP Home Page
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coolbeans
Health Professional
| Joined: | Tue Jan 31st, 2006 |
| Location: | USA |
| Posts: | 101 |
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Posted: Fri May 26th, 2006 12:41 |
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i've done some shopping with solumbra. they offer watersuits.
jan
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RA FM allergy asthma GERD MCS FBD IBS lichensclerosus 125D59 Ph1Jun06 ModPh2Aug06 Ph2Jan07 Ph3Jun07 tramadol diazepam NoIRs lite exp r/t work cover up 25D8
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Claudia
Member in Phase 3
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Posted: Fri May 26th, 2006 13:11 |
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| If you live in a cold area and can swim in cold water, like at the beach, why not an ordinary wetsuit? I plan to get one second-hand and do a bit of snorkelling one day. (Face down, I should be all covered!)
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MP Phase1 23Mar_06; Phase2 July 10_06; Phase3 Nov 4_06. Dx Thyroiditis (Thyroxine); arthritis; glaucoma; CFS (1988-92);Kidney & bladder probs. Feb06 1,25D=43.3; Aug07 1,25D=27.5; Feb06 25D=44; Aug07 25D=28; Nov07 25D=36; Mar08 25D=16.4
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Leesa
Member in Phase 3
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Posted: Mon May 29th, 2006 01:20 |
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We went to the Natural Science Museum (Houston) yesterday-after leaving the front entrance which has tons of windows, there are NO windows at all!!! We looked at dinosaurs and all kids of cool stuff and then went to the IMAX movie and could have done th planetarium too, but did not have time, we loved it. We had so much fun, we bought a membership! It felt so good to be somewhere I could take off my hat and my gloves! I just left my glasses on! It was GREAT!
Now tonight we are going camping in our backyard, thanks to your suggestions, Jill. We bought an outdoor fireplace (with marshmallows and all the fixins) and hung up a string of xmas light and put up the tent. We are just waiting for dark now!!! And we will swim and camp-the kids are so excited! What a fun Memorial Day!
I am still emailing Camp Sundown...more info to come hope fully!
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Sarcoidosis(12-04 biopsy):Uvitus-eyes, Swollen- Parotid Glands, Granulomas-arms, some joint pain & fatigue; Started MP 1-06;Phase 2 03-06 Phase 3 07/06 NO MORE Eye Drops! D test 11-04:1,25D-70 & 25D-46;(9-06)25D-17 (1-07)& 16(2-2008)
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lionel forbes
Member in Phase 3
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Posted: Mon May 29th, 2006 06:27 |
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| leesa,since starting mp,i never became a ce aveman. i still go out as usual but with all the precautions;i made shirts from special spf 50plus fabric, wear noirs use k cream, measure lights to 30 lux, gloves at all times outside of the house.
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Sarcoidosis/lungs via biopsy 125D28 25D24 Ph1Jan05 Ph2Mar05 Ph3Aug/06 no other meds 25D7.8 (Nov07) NoIRs cover up
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coolbeans
Health Professional
| Joined: | Tue Jan 31st, 2006 |
| Location: | USA |
| Posts: | 101 |
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Posted: Mon May 29th, 2006 08:09 |
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what kind of gloves are you all wearing?
jan
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RA FM allergy asthma GERD MCS FBD IBS lichensclerosus 125D59 Ph1Jun06 ModPh2Aug06 Ph2Jan07 Ph3Jun07 tramadol diazepam NoIRs lite exp r/t work cover up 25D8
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19472 |
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Posted: Mon May 29th, 2006 08:14 |
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Jan
as well as any replies, see Topic Nice gloves for driving.
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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LeAnne
Member in Phase 3
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Posted: Mon May 29th, 2006 12:18 |
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Don't laugh, but I needed some new gloves and couldn't find any in department stores, so I looked on ebay and purchased some black wedding gloves. They weren't the long ones, but wrist length. I haven't gotton them in, but I hope they aren't as hot as the old gloves I was wearing. I only paid $7.00 for them and they are new in the package.
LeAnne
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Neuro-Sarcoidosis/lungs, spleen, nervous system, skin lesions, 125D66, MP 8/05, Ph1 3/06, Ph3 7/06, NoIRs, low lux home, cover up, 25D9 Sep07
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Vicki SA
Member in Phase 3
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Posted: Tue May 30th, 2006 08:49 |
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My best driving gloves gloves are summer motorcycle gloves. They are black leather, DriRider. They weren't cheap I guess but they will last me for the MP.
I also bought some cotton gloves from the local Chemist and dyed them black. They are awful! They were a terrible shape to begin with and they were worse after I dyed them and I added some black rib trim to make them usable. Still they are a back up if I forget my other gloves. I leave a pair at work, just in case!
cheerio Vicki
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ME/CFS 2000, Splenectomy, 8/05 - 1,25D51,25D16.5, Ph1 12/05, Ph3 1/07, Zoton 40mg, 2008 - cover with light r/t Work 3/7, NoIRs, hat, cover well, invis. zinc for outside, low lux home, Sept08 25D - 8
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