a quick email update/prayer requesst

[Guest guest]

Dear Friends, Family, and Family of Choice,

We missed several phone calls from loved ones over the weekend, and I want to

apologize. Also, I didn't get to get on the computer. We had planned to go to

Sam's Club on Saturday to stock up (a trip to the Dallas area, as we have no

Sam's here), but Dr. Heller (from the Univ. of Texas Southwest Center for

Mineral Metabolism in Dallas) called me at home just as we were preparing to

leave. I had seen Dr. Heller last week for my routine visit (had a bone density

test, 24 hr. urine collection, blood work, sonogram of my bone strength, etc.).

At that time, Dr. Heller had written orders for my potassium level to be

rechecked in the lab with a new blood draw, as my potassium count 2 weeks prior

was only 3.4...he called to tell me Saturday that when I had my blood redrawn

on Wed of last week, my potassium count had dropped to 2.9 despite me taking the

liquid (and easier metabolized) time released Rx potassium he prescribed twice

daily (and I've honestly NEVER tasted anything worse!). Dr. Heller said that

this was quite serious (he knows I must take Florinef for my POTS as per Dr.

Grubb's orders, and that I also take magnesium oxide to help my body " hold onto "

the potassium supplements I swallow), and asked if I was experiencing any

tachycardia or other symptoms that could signal trouble. I was honest and told

him yes, that my heart had been racing (I can hear/feel it beating in my

eardrums), and that I frequently feel shaky, dizzy, and weak....and that I am

perpetually thirsty despite a LOT of daily Gatorade. He said quite frankly, " If

we can't get this potassium level up now, you could be in danger of cardiac

arrest. " Not good. He further told me that while my bone density scan showed

that my spine had remained the same, my hips were worse (density wise), and that

I am in true danger of hip fracture! Dr. Heller also went on to express concern

about my slow bone turnover in terms of an eminent cervical surgery to fuse some

vertebrae (my Dallas ortho agrees with Dr. Heffez in Chicago that some surgical

intervention is called for, but disagrees about how it should be done....they

are going to speak by phone and have a " meeting of the minds " ....both are

particularly concerned about my EDS as a factor in healing and supporting

further hardware long term). At this point, Lennie and I both tend to lean

towards my Dallas ortho's position, as he has treated me for several years now,

and did participate in my 1999 cervical fusion. Therefore, he has better and

more comprehensive knowledge of me and my body and its many weird attendant

medical issues.

Dr. Heller asked me when I could come in for another blood draw, and I told him

I was coming back to the Dallas-Ft. Worth area on Mon. (today) to bring children

to various drs. for follow-ups and could do it then. So I will. I sincerely

thanked him for taking the time to call and tell me this news, even though it

was bad. Just hearing what he had to say made me have MORE tachycardia! Lennie

and the kids didn't think I ought to go to Sam's Club, but to stay at home and

just rest, but I said I wanted to go anyway. We'd been planning it, and I

needed to get out of the house and live my life instead of thinking about how

sick my body is inside. We went (took us all day), and really stocked up and

had a nice time together and laughed a lot. I rode in the electric cart thingy

as usual to conserve my energy, but was even able to stop at a Target and get

Abby some new clothes, as she had outgrown many of hers. It is very important

to me to use what energy and strength I have on and for my family. That is what

is of utmost importance to me.

On Sunday, I went ahead and was able to bathe, dress, etc. and actually went to

church with (the kids all go to different churches...but hey, they are

going! ). I enjoyed it very, very much, and got to see a lot of people I knew

and who knew and remembered me and who love me. That was truly wonderful, and I

am so very thankful I got to go. Meantime, Lennie accompanied Abby to her

church. I had gone to church with Abby, then with Isaac, the previous Sunday. I

admit that the " stand up-sit down-stand-up-sit-down " routine of church services

(not to mention just getting there, walking inside on my cane, greeting old

friends, etc.) is physically strenuous and honestly draining for me. But it was

well worth it, and I plan to do it again as I am physically able. Isaac had a

truly wonderful 17th birthday last Friday! We were so thankful to be able to

surprise him with a safe, good condition (and very reasonably priced) used

car....his first car! Boy, did his face ever light up! It will also make my

life easier, as he can now drive himself and to school and I won't have

to make that early morning daily trek. On Sunday (yesterday), we enjoyed going

to the movies as an entire family (plus Isaac's girlfriend). That meant a great

deal to me, and I loved being able to get out. I did finally literally pass out

while folding laundry last night, and was carried to bed. But it was definitely

worth it! Any and all prayers are gratefully appreciated. I'll catch up on

all my emails as I can.

Love,

~LoneStarRose~

(~~)