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I am a wife and mother who also has cystic fibrosis and a mitochondrial disease.

Monday, November 23, 2009

Something else...

Well the title is because I just got a new diagnosis the other day (Friday). First off my doctor gave me hell (in her own way) for skipping IV therapy so much. So I explained to my primary that I have been feeling like crud. I skipped about 3 weeks and my CK went up to just over 2200; and after getting lipids for a week it was down to just over 1500. She asked what was going on so I told her all my symptoms as of late; and she said "Hmmmm". (LOL)

She called the nurse in and had me lie down. She took me blood pressure and pulse; she had me sit up and she took BP and pulse again; and finally she had me stand and got the info. The nurse helped me sit back down and left the room to go talk to the doctor.

In comes the doctor and she is talking, but honestly my head was pounding and I couldn't pay attention. Really all I could make out was "you have POTS Chrissy" and "new medicine to help".

So I came home and looked it up...
What is Postural Tachycardia Syndrome?
Postural orthostatic tachycardia syndrome (POTS) is one of a group of disorders that have orthostatic intolerance (OI) as their primary symptom. OI describes a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position. The primary symptom of OI is lightheadedness or fainting. In POTS, the lightheadedness or fainting is also accompanied by a rapid increase in heartbeat of more than 30 beats per minute, or a heart rate that exceeds 120 beats per minute, within 10 minutes of rising. The faintness or lightheadeness of POTS are relieved by lying down again. Anyone at any age can develop POTS, but the majority of individuals affected (between 75 and 80 percent) are women between the ages of 15 to 50 years of age.
Doctors aren't sure yet what causes the reduced return of blood to the heart that occurs in OI, or why the heart begins to beat so rapidly in POTS, but the current thinking is that they are the result of abnormalities in the sympathetic nervous system (which is responsible for decreasing muscle tone and increasing heartbeat in reaction to situations of stress or emergency) or the parasympathetic nervous system (which does the opposite) or both .
(taken from http://www.ninds.nih.gov/disorders/postural_tachycardia_syndrome/postural_tachycardia_syndrome.htm)
The symptoms of POTS are life altering and debilitating at times. POTS patients use about three times more energy to stand than a healthy person. It is as if these patients are running in place all the time. Activities such as housework, bathing, and even meals can exacerbate symptoms (Grubb, Kanjwal & Kosinski, 2006). Research shows that POTS patients' quality of life is similar to those with congestive heart failure and chronic obstructive pulmonary disease (Benrud-Larson, Dewar, Sandroni, Rummans, Haythornthwaite & Low, 2002) Twenty-five percent of people with POTS are disabled and unable to work (Goldstein, Robertson, Esler, Straus, & Eisenhofer, 2002). Most patients will have to make some lifestyle adjustments to cope with this disorder.

So...that explains a lot for me! December 1st I have a colonoscopy and endoscopy scheduled. I'm a little worried but they say it will help my digestive problems be diagnosed. My problems are too different from "standard" (their words not mine) CF digestive problems; and with my mitochondrial disease...well they just don't know. So getting these tests done will help figure out the puzzel that I am! (HA!)

Thursday, November 5, 2009


So I haven't blogged in a while. I'll be honest as to why...I did get some questions (Like I had asked for) but I just never felt quite up to writing/typing a whole blog. My muscles have been really sore and my joints achy too. I have had off and on fevers and just feeling less than 90%. I didn't want to get on here and complain. Well today I snapped out of my unwillingness to communicate. I hate telling people I'm sick, scared or hurt. I do it but usually not until I am pushed over an invisible line that I have drawn in the sand. Well...I'm going to try to change. I can say "I don't feel well", "I'm sore", or "I'm sick" with out counding whiney...I'm just going to have to practice at it. This entry will be my first shot.

I don't like to constantly complain because I feel like I could be doing so much worse. And honestly, complaining does not help me to feel better. However, for those who read this...I don't feel well. I'm not deathly ill or anything and I don't have H1N1 (knock on wood); its the same old same old. I am super tired, lacking energy, forgetful, achy and sad. All of these things can be attributed to my inablility to digest and absorb, except for the sad part. I am sad because I'm sick all the time (it feels like it) but mainly because I can do nothing for the people suffering around me. So I'm going to do what I can, which is pray.

Most of you know I am a spiritual person so praying is something I think I might be good at!
I have been praying for peace and healing for sometime. As a matter of fact I have a list so far it includes:
Scott's Dad, RR, Lauren and her family, Ginger and her family, my Grandmother, Chel, Deborah and her children, Jessica and her Dad, my brother Pete, Piper...and several others.

But I want to ask you who read this to give me names too, I want to gather a litany of them! I know there are people out there who need prayers, and you'll be helping me to feel somewhat useful durring this down swing of mine. So just leave a post on here whether you know me, or you just happened on my blog...whatever reason...tell me who and why. Those who have passed, those who are healthy but struggeling, anyone you think I might be able to help; if only a little bit.