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06 August 2011

Sifting thru


I've been busy.  We had company a couple of times in July.  I LOVE having company, but am not sure how much i will be able to do this in the future.  I am running up against my limitations more frequently these days.  I won't be able to do events (like the currently running OC fair or the BB Antique Car Show) any more without a wheelchair.  I'm not sure how to make changes with company, but i need to.  I tried doing a ladies Bible study recently and found that with my other obligations, getting ready to leave for OC the following day, and the timing - i can't do it.  It simply takes all my energy.  

So, i think i am trying very hard to come to terms with my life such as it is.  And it IS a good life.  I can still do so much, especially compared to others who are disabled.  But it is also hard to run up against limitations of wanting to do something and simply not being able.  I'm not talking about climbing mountains, either!  Just gardening and visiting with friends.  

I was talking with Duane on our drive down Tuesday.  I was telling him that i don't think travel is something we will be able to do (other couples who are childless tend to travel quite a bit or have other activities in their lives). While discussing this i was hit with an overwhelming homesickness (i'm homesick for Montana mostly in the summer).  It also occurred to me that as i seem to be losing functioning, if we don't do it now, we might never be able to.  I could get better, i hope i get better, i want to get better, but there is the possibility i 
could get worse.  

So, if all things work out well, we are taking a quick trip to Montana late this month and early September.  The plan is to actually camp 2-3 of those nights, to spend nights with friends/family 3 nights, and in a motel 2-3 nights.  I don't know if we can do this, but i do know i want to try.  

I've been on the search for a doctor.  Not that i'm really hoping they can do much for me, but i do need this documented.  Saw someone here in BB.  Duane went with me and at first we both were pleasantly surprised with his answers - until i spoke of CFIDS/ME and disability.  Then he let us know - reading between the lines but clear none the less - that he thinks the majority of people on disability are malingering.  Oh.  Thanks.  

So i found another alternative med doc in OC, spent ten hours filling out her paperwork, and have hit a stall because i'm not willing to sign arbitration forms.  I think it is largely a moot area, for i can't see myself ever suing anyone (haven't yet in my life).  So, why not just sign them?  Because it is signing away Constitutional rights and my position is that we have lost too many already and are losing more each day.  I'm not willing to blithely sign them away.  I am quite willing to sign releases on things individually.  I'm happy to sign that i am aware that certain minerals, vitamins, and herbals are not "standard treatment" and that i'm willing to take the risk and other things like this.  But not a  free for all signing away my rights.  

I have also come across numerous websites of fluoroquinoline antibiotic poisoning (Cipro and Levaquin are two of these).  I had honestly thought it was the fluoride in the Cipro that did all the damage.  It might very well be.  But these antibiotics have done tremendous damage to many people.  I was aware that they have caused tendon degeneration that people have had difficulty healing from, but there is much, much more. There is a black box warning on them about rupturing tendons and also "worsening of myasthenia gravis symptoms" - muscle weakness.  In fact, i have to count myself one of the lucky ones because some of these folks are completely bed-bound, unable even to transfer themselves to a wheelchair without assistance.  

(So, i wasn't able to load the pic i wanted, but this is what i use.  You can find it at hCG 1234 website.)

On the positive side of this, i lost 15.5 pounds on the hCG diet and maintained the loss thru 3 weeks of "maintenance" and another week of "normal eating."  I also discovered that sugar can trigger a migraine for me.  And that gluten was probably doing more damage than i was willing to admit.  So even "normal diet" will not be including sugar (much) or gluten, or probably grains much at all, except as the rare occasional treat.  This is the diet i had been striving for, but was having such a hard time achieving.  

I began round 2 this past Monday, the actual diet began on Wednesday.  I have lost 3 pounds so far.  

Duane did the first round with me and lost 20 pounds.  I'm on my own this time as he has no more to lose.  His mother is doing this, too, but she isn't following the diet very carefully and is not losing as fast.  Still, in 3 weeks she lost 9 pounds and 7 inches (as measured by Curves).  The lady at Curves was very excited, thinking she had done it by exercise alone.
So, i am very pleased to be losing weight for the first time in 10 years.  I plan to do one more round after this one to get down to the weight i want to be.  :)  A nice benefit of the hCG drops is that i sleep better while taking them, too.  

I've much more to say, of course.  I always do!  About my projects and other things, but this is already long and i'll save it for the next post. 



kare said...

i'm praying for you!
i too have trouble traveling... but we Do anyway... and stop & rest along the way.... specially after going through toxic zones.
i will keep you both in my prayers as you travel to see family... so precious.
i'm sorry you're running into ignorant Dr.s after all you've been through.
They're still so far behind the curve in understanding "invisible" disabilities, it's very disheartening.
You're not alone!
love & blessings

lisa said...

You are very right, do everything you want to now while it is possible, I think even if you aren't one who is sick, I am finding out that you should live like there is no tomorrow and to enjoy life now while we can!! I think it is great if you can go back to Montana!! Take things slow and enjoy it!! There is nothing that says you have to get from point a to point b in record time!! I hope you can come up with a medical cure! My prayers!!

Linda said...

Oh Kathryn I do hope you can take your trip to Montana and enjoy your time there. I am so sorry that you have your health issues. I understand, as I have so many myself. I pray that the Lord will lead you to the best doctor who will treat you naturally and who will be kind and encouraging.

Congrats on the weight loss. I am trying to lose too. And I have been walking with my Leslie Sansone DVD's. Just doing what I can.

Praying for you,

Mrs. Mac said...

We just got back from Glacier .. had a great time. If you drive through North Idaho .. let me know :)

Kathryn said...

Kare - thank you. I know a number of us are struggling. I'm glad you still travel, you haven't come to see us yet! I just read that if a doctor can't find what is wrong with a person in a lab report, he wants to put them on psychotropic meds. I've found that to be accurate, sadly.

Hi Lisa - yes, i think we all need to be more aware of each day because none of us have the assurance we will be around next year or even next week!

Kathryn said...

Linda, thank you. I hope and pray that you will have answers for your issues as well.

Hi Mrs Mac. :) I wish we could get to Northwest MT and Northern ID, but i'm afraid it is going to add too much time to the trip. I've a friend in Helena and an uncle in Polson (just south of Kalispell) and you and Jes in the north, too. I don't think we can take the extra time, tho i'd like to.

Hope you had a great trip in Glacier. I was only there once. Not the part of the state i got to very often.

Mali said...

I'm so sorry you are going through this. I'd just add that travel doesn't have to be frenetic. It can be planned to be calm, with plenty of rest periods - preferably with nice views or in a warm spot. I'm glad though that you are travelling while you can.