I have many friends that I laugh and cry with. Then I have friends I just talk to on the phone, some I email and some I just pray for.
I have a special girlfriend I have known for years dating back to my home in West Allis. I think I have known her at least 25 yrs. The reason why I even mention this is because she even emails me to tell me she misses my blog and that it is time to update. I think if it wasn't for her every couple months reminding me I would totally forget. Thanks Carol you are very special to me.
As long as I am on the subject I would like to tell you about our relationship and how it became so special. When I first met Carol we bonded immediately we both had children around the same ages. Anyway as time went on she had a few more children - but she had a health condition is which she needed my help - to drive her children to school. So I would send off my children to school - drive to her house - and try to put her children in my car (station wagon) - but it wasn't big enough so I needed to drive her children in their van. To me the hugest van I ever saw - and I had to drive in rush hour traffic with someone else's children to and from school. It was only for a few months because they were going to move to another town and then begin to home school.
Now you are probably wondering why I even mentioned this, well here's why. 21 years later after many of her children were out of her home we were talking about vehicles, we were talking about the same van she had way back in the days of school age children and I got to talking about my transporting her children to school and I finally told her how everyday I was scared to death to drive her van I had white knuckles. I didn't have the heart to tell her because she was my friend and friends do whatever they can to help one another. We laughed so hard when we talked about it. She said why didn't you tell me? Why I said, there wasn't anything you could do about it - you couldn't drive the children to school and besides that's what friend are for.
She has finally given up that van from 25 years ago. Oh the memories of that van. Thanks Carol for your friendship, thanks for being there for me and for reminding me it's time to blog. Love Ya.
My owner lives with many medical illnesses including Lupus, an enlarged heart and Exercise Induced PH secondary to her lung condition. To learn more about PH (pulmonary hypertension) a lung disease press the bear on the side or go to http://www.phassociation.org + She now has an ostomy, to better understand that just press the Ostomy Support Group button.
April 13, 2010
April's Updates
Therapy: I have been in Neuro Therapy 2 days a week and speech therapy 1 day a week. I was told by my therapist she doesn't work on the orthopedic part of me that I needed to go to see my ortho therapist. That ended being 2 days with him as well. 5 days a week in therapy I needed a break. In Neuro therapy they work with balance and endurance she tested my walking for 1 minute at her normal pace. That was a joke - I walked 100 feet - pulse was 124 and I was ready to pass out - her response was I guess you are not ready to do any kind of Pulmonary Rehab. What was she thinking?
With all the therapy going on I was being torn apart. I was so tired I didn't know what to do. Finally I talked to my neuro therapist and asked her what she was trying to do with me and if there was any way my ortho therapist could work with both aspects of my therapy? She talked to Craig and now I am doing only 2 days of therapy.
Colon: I have had 9 weeks of biofeedback for my colon and she stopped my treatments because it isn't working. Well both my colon surgeon and my GI didn't think it would work because my hypo-motility issue is coming from the small intestines not the large colon. Anyway we tried. I see my GI May 5th to see what I am up against.
Pulmonary: I saw my Pulmonary Dr in Feb. and he said I am not getting better but worse and said it will be interesting to see how the autonomic testing shows. He agrees that something is causing my autonomic system to go haywire. He had me do an esophragram because he said if the Phrenic Nerve is not function the esophagus wouldn't be either. That test came back - mild esophageal dysfunction. Another autonomic disorder.
Heart: Somewhere in between all this I received my Echo/Bubble Study showing Left Ventricle Diastolic Dysfunction (LVDD), with impaired relaxation. Right ventricle: wall thickness mildly increased. Right Atrium is mildly dilated. So basically the Dr who saw me in Jan. never told me this I found out when I requested to report 3 times. This test shows I am having heart problems but she said nothing. I did talk to my Cardiologist but there isn't anything he can do for me now because of my consistently low blood pressure. The meds they put people on for this condition drops the blood pressure and for me he said it could kill me. So I have to get worse before I can get better.
I was told by a Rheumatoid Dr that my problem is just Fibromyalgia - but no one is in agreement with her.
Autonomic testing: My autonomic test results came back a couple of weeks ago, my neurologist called me to tell me the news - inconclusive - telling me some tests were normal and others did not give them enough data to give an autonomic diagnosis. She wants me to go to another hospital to have a complete work up because she believes without a true diagnosis as to what is going on I will not get better. Treatment can't begin until they know what they are dealing with. I am now waiting for my PCP to set up the arrangements for UW Madison and get back to me. She has been out with the flu and just got back today.
With all the therapy going on I was being torn apart. I was so tired I didn't know what to do. Finally I talked to my neuro therapist and asked her what she was trying to do with me and if there was any way my ortho therapist could work with both aspects of my therapy? She talked to Craig and now I am doing only 2 days of therapy.
Colon: I have had 9 weeks of biofeedback for my colon and she stopped my treatments because it isn't working. Well both my colon surgeon and my GI didn't think it would work because my hypo-motility issue is coming from the small intestines not the large colon. Anyway we tried. I see my GI May 5th to see what I am up against.
Pulmonary: I saw my Pulmonary Dr in Feb. and he said I am not getting better but worse and said it will be interesting to see how the autonomic testing shows. He agrees that something is causing my autonomic system to go haywire. He had me do an esophragram because he said if the Phrenic Nerve is not function the esophagus wouldn't be either. That test came back - mild esophageal dysfunction. Another autonomic disorder.
Heart: Somewhere in between all this I received my Echo/Bubble Study showing Left Ventricle Diastolic Dysfunction (LVDD), with impaired relaxation. Right ventricle: wall thickness mildly increased. Right Atrium is mildly dilated. So basically the Dr who saw me in Jan. never told me this I found out when I requested to report 3 times. This test shows I am having heart problems but she said nothing. I did talk to my Cardiologist but there isn't anything he can do for me now because of my consistently low blood pressure. The meds they put people on for this condition drops the blood pressure and for me he said it could kill me. So I have to get worse before I can get better.
I was told by a Rheumatoid Dr that my problem is just Fibromyalgia - but no one is in agreement with her.
Autonomic testing: My autonomic test results came back a couple of weeks ago, my neurologist called me to tell me the news - inconclusive - telling me some tests were normal and others did not give them enough data to give an autonomic diagnosis. She wants me to go to another hospital to have a complete work up because she believes without a true diagnosis as to what is going on I will not get better. Treatment can't begin until they know what they are dealing with. I am now waiting for my PCP to set up the arrangements for UW Madison and get back to me. She has been out with the flu and just got back today.
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