Monday, July 24, 2017

General Update

My recovery from last year is going really slow.  However, I'm coughing way less.  We have a buyer for our old house but we haven't closed on it yet.  Hubs keeps going over there every weekend so my cough hasn't gone away completely yet.  The concept of his showering and changing clothes after being over there has never occurred to him.  I'm lucky if he changes his shirt and that only happens if I bug him.  Then he sleeps in our bed and contaminates the sheets and blankets.  So I'm still coughing.  Occasionally I have to use my asthma inhaler.  But things are way better than before.  A pack of cough drops can last me almost an entire week instead of one day.  I'm using my inhaler about once a week instead of daily.  I do have setbacks if I'm not careful when unpacking boxes.  My son gets it so he showers, changes clothes or handles crap from the old house that hasn't been decon'ed yet.  He can see the direct relation between his exposure and my coughing fits.  Hubs just gets annoyed that I'm coughing rather than helping out.  Sigh.....

I'm still pretty crashed.  I'm sofa bound.  I'm cooking very simple meals still.  Luckily it's summer so we can grill a lot so all I have to make are sides or salads.  On my good days I'm scrambling eggs and making coffee for breakfast in addition to the simple dinners.  I'm getting out a bit when my son is around (he's currently flying back and forth between here and CO for his work).  We go for coffee and late breakfast almost daily when he is here.  I get to the supermarket once a week and have just started to go to the farmers market roughly twice a month.   I'm not using enough fresh veg to go more than that.  It is a waste of spoons.  I'm still eating way too much take out but that has been improving.  I actually feel better on days where we eat in.  Even though I'm not making everything from scratch I'm buying mostly organic nonGMO foods and it makes a marked difference in how I feel.  I'm considering hiring a prep cook to batch cook for me.  My son has a friend that is interested.  Haven't gotten around to arranging it of course but I'm hoping it will happen sooner than later.

After one bust, I managed to find a chiro I really like.  (That is a story for another day.)   I'm doing phone conferencing with my sleep doc and I FINALLY got it to work so I no longer have to travel to Jamaica Plain to his office.  I've an apt with a potentially new internist.  She works with Emerson Hospital and has a background in rheumatology so might be familiar with fibro.  Here's hoping.  My old doc, while not perfect, actually had some exposure to CFS/ME through a relative that ran a clinic for patients.  I need some follow-up bloodwork from her: cholesterol, thyroid, vitD, and iron.  Tell her/teach her about my illness and get the "lose weight" lecture.  I still haven't managed to fill out all the paperwork yet.

Presently I'm push/crash cycling so I have to work on that.

I've been trying to improve my sleep space.  I was sleeping in the guest bedroom but my son has been visiting more and more since he no longer has a NYC apt.  So far I've purchased blackout drapes for the master bedroom which work great!  I bought a wedge pillow which is comfy but still smells weird so I've got it degassing.  I think the waterbed still needs some water removed as it is too hard.  I still have to find a solution for overheating with the mattress and pillows.  Probably need another cotton or wool filled pillow and a cotton or wool filled mattress cover.  Right now I wake up and I'm soaked in sweat.  I found that if I sleep across the bed I do better than if I sleep normally in it.   I also bought an AC unit for the masterbed but it isn't hooked up yet.  Turns out the central AC unit is too small for the house and only cools the first floor adequately.  The solution is to put a second unit in the attic to cool the second floor.  The portable AC is a nice stop gap measure until we refurb the central AC in a year or two.  Plus, typically I'm the only one that wants to sleep in a refrigerator.  Sleeping during daylight hours means the bedroom I'm in heats up to oven temps which wakes me up and makes me miserable.  Both guys sleep at night so the bedrooms aren't too bad for them.

Once I'm done with the masterbed, I'm going to fix the guest bedroom because damn that gel bed is AWESOME!!!  Plus I bought the adjustable frame to go under it so I can raise the head and foot of the bed to get it just right for my aches and pains.  All the room needs is some new blackout blinds.  It is nice to have a second space to sleep in.  I'm very comfortable there and sleep the best in that room.  Hopefully I can upgrade the masterbed so I'm equally comfortable sleeping in that room also.  It is a pain to drag my CPAP gear back and forth between the two bedrooms.  Until my kid gets another apt somewhere he'll be here most weekends and some weeks so I get kicked out the room every four days or so.

Other irons in the fire: I'm trying Dr Teitelbaum's protocol for increasing blood volume.  I'm still experiencing dizzy spells even with my period problem solved.  My biggest hinderance lately is dizziness on standing and getting out of breath really easily.  I figure fixing my blood volume will help.  So I ordered Vitalyte (formerly known as Gookinaid) and D-ribose powder.  I already have CoQ10 and zinc.  I like the electrolyte powder.  I bought lemon.  I add the D-ribose to it and have been drinking two glasses a day.  I'm already seeing improved brain function.  That is typically the precursor to improved physical function.  I haven't started the CoQ10 yet.  The protocol also calls for acetyl L carnitine but it is contraindicated in folks with thyroid issues so I'm skipping that part.  I might introduce it at a very low dose after I get my thyroid tested by my new doc.  That way I'll have a baseline and see how the supplement affects my thyroid.

I'm also trying to sunbathe more.  I haven't been going outside due to the heat.  I used to sunbathe late in the day after 4pm at my old house but my deck goes into shade pretty early due to all the trees so I can't sunbathe late in the day at my new place.  I'm now trying to go out no matter what for 5-15mins around 3:30pm.  It isn't long but it is better than nothing and I can tolerate the heat for that time frame particularly since I'm stepping back into the nice AC.  I always take ice water outside with me.  And I get almost naked so the sun exposure is all over and I get a good dose of sun in a short period of time.

That is about it.  This post has gotten way longer than I intended.  But I have plans.  Lots of plans.  I was getting a bit depressed but decided to take the bull by the horns and try to improve things for myself starting with better sleeping conditions.  Then food, then sun, then supplements.  Maybe new meds after I see my new doc.  Hope has returned!  Woot!

Things I want to do but haven't even thought about yet; get a new dentist, get a new therapist, hire a house cleaner, detox from mold.


  1. Oh, wow, I haven;t been here in ages - sorry! I am having a lot of trouble finding time to visit blogs, even though I very much WANT to.

    I don't think I knew that your move was due to medical reasons. Was it mold issues in your old house? I've been thinking of looking into that (though I am in fairly good shape for someone with ME/CFS and have found plenty of treatments that help).

    On the OI/blood volume front, have you tried any treatments for OI? Perhaps Florinef, midodrine, or beta blockers? Treating OI has been life-changing for my son and I - it's what allows us to live active lives without crashing. Just something else to consider.

    Glad you are settling into your new house - having lots of plans is a good sign! :)


    Living with ME/CFS

    1. Yes, when we were renovating the kitchen last year hubs opened up a wall and there was black mold inside an entire bay. Turns out the roof had been leaking into the inside of the wall and we had no idea. I immediately got a nasty chronic cough that wouldn't go away even when I was put on steroid inhalers. We had been talking about moving anyway and this was just the final straw. Hubs cleaned up the mold but my cough never got better until after I moved.

      I did try Florinef for the OI but it was raising my blood pressure too much so the doc took me off it. I asked my primary for beta blockers but he said no. I haven't heard of midodrine before. Something to look into. I just found a new primary but I need a new CFS/ME treating doc.

    2. Oh, wow! What an ordeal! I hope that you will see your health improve bit by bit now that you are in your new house & away from the mold.

      I can't imagine why your doctor said no to trying beta blockers. When I asked my doctor, she said, "That's an easy one to say yes to!" because they have been around for so long and are well-known. If you go with the smallest dose available (which you SHOULD do anyway with ME/CFS), then there are few or no side effects, too. BB's have been life-changing for my son and I, so maybe you can ask again now that you have a new doctor - just remember, TINY doses, 24-hour long-acting type, and taken at bedtime. In case you want to know more about our experiences, side effects, etc:

      Glad you found a new doc! You might want to consider traveling to NYC to see Dr. Levine for a ME/CFS specialist - she is one of the best in the world and not too far from you on the train. She is used to working with patients long-distance so you would probably only need to physically go there once a year, then she follows up by phone & e-mail.

      Hope things improve for you in the new house!

    3. I think I will try asking the new doc. We were so busy with all the other info I never got to ask her about actually treating the CFS/ME. I'm just doing catch up bloodwork/monitoring right now.

      Not a bad idea to travel to NYC. I don't travel well so not sure how badly I'll crash afterwards. It is a six hour car trip and I get messed up after 30mins. Train wouldn't be much better either. I would have to arrive a couple of days before and just sleep before the apt. if I do go. I'm really striking out finding a treating CFS/ME doc around here. The one I saw last year after all that testing and bloodwork and multiple trips into Boston only offered exercise and therapy. I was livid!! I think she considered me a difficult/uncooperative/noncompliant patient when in reality I forget stuff. I forget constantly so have trouble adhering to anything/following up after trying something etc. At least I got setup on a CPAP out of all of it which was a great thing.

    4. Yeah, I have never heard of a ME/CFS specialist in MA or anywhere in New England, for that matter. I think Dr. Levine is the closest one to you. I know it would be very difficult for you, but it would be well worth it. She works closely with the other handful of top experts in the US and uses the latest and best treatments. Our lives are much improved because of her! Enjoy your new house :)

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