Why are so many of us who call ourselves Christians not showing Christ's love to others? Do we really think if Jesus were on earth today he would show up at the local church on Sunday morning wearing a designer suit? That isn't what Jesus was about. He stayed with the undesirables - the poor, the sick, the sinful. He did not avoid people whose behavior did not please him - he embraced them and loved them. So many times we feel we can judge others, but that is not what we were instructed to do. We are to love without judgement. I pray God will help me do that. I will do my best to do more to help those in need and to love those rejected by most "Christians". I will do all I can now but pray for an opportunity to do more. God has a purpose for all, and he can use me even as I am.
Health update - Until Dr Haddadin returns from his trip to Jordan he does not want to try changing anything. He asked me to tough it out for 2 more months taking the medication I am on. My condition may not be able to be improved. I am still having high pulses, but they are not so high that they need to be treated urgently unless I am physically active. The medication keeps me at an acceptable rate at rest.
Scott and I have a friend who is in a horrid situation. He has Stage IV lymphoma and is undergoing chemotherapy. He, like myself, lost his job due to being unable to work. His wife's position was eliminated due to budget cuts, so they are paying COBRA Insurance and are living on almost no income. Please pray for God to provide for them and to comfort them. My last message from them was that they were praying for me. I feel so unworthy.
Sunday, May 22, 2011
Friday, May 20, 2011
Saturday, May 7, 2011
How Am I?
That seems to be a common question. For most of my life I believed that it was just a coined phrase and that no one really wanted to know. Everyone always answers "fine". If you don't really want to know, stop reading here - the next paragraph will answer how I am . I guess I am in one of those moods to let it all out.
5 weeks ago my glomerular filtration rate was 43. Last week it was 34. That puts me 4 points away from stage 4. I had more labs drawn Thursday that I don't have results on yet, and I am currently doing a 24 hour urine collection for creatinine and protein.
My heart rate is running high 90s - low 100s at rest. In the past Dr. Haddadin has said that is too fast. I don't know what he will decide to do - he may insist I try a new medication. I feel better overall on what I am taking, but will defer to him to decide what is best in 2 more weeks.
How do I feel? - I get sharp pains in my head that only last for a minute or so. I get severe muscle cramps all over my body but they are less frequent than when I was taking Multaq. At times I shake all over. When I stand up I sometimes get very unsteady, and sometimes everything goes black. Walking to the bathroom makes my heart race. My body is so tired but my brain won't shut off to let me sleep. At times I am very nauseated. My nose swells shut at times. I itch all over. I get rashes. My eyes water constantly. My feet look like balloons - so does my face, and I have a Buddha belly from the prednisone.
As for anaphylaxis, the last one was Wednesday night around midnight. I did ok after using my Epipen, extra Benadryl and prednisone.
My internal medicine doctor signed paperwork for me to get a handicap parking placard. Now if on the rare occasion that I decide I want to go in a store or restaurant I won't have to be hauled so far across parking lots in a wheelchair. It will make it much easier for who ever is driving me. Kristen is the best wheelchair motor so far. She is so patient. It is very rare that I leave the house anyway because I am so afraid of getting exposed to something and going into anaphylaxis in a public place. It is bad enough at home, but it really freaks people out when they don't understand what is happening.
Scott is having a really hard time with his back. He was unable to make it to work 2 days last week.
I miss being independent. I miss going to work. I miss my friends. I really hate that I can no longer go jump in the car and take off for where ever I want to go. As much as I hated housework, I would love to be able to just mop the floor or clean the bathroom.
So - what do I do to keep from going insane? Not much at the moment - watching TV mainly. Facebook. Ravelry. Dreaming of my grandson. Petting my dog. Watching birds and squirrels outside my house. Knitting a little bit. I try to sit outside a little bit each day but I get really congested. It is amazing that I can get congested with the amount of medications I take, but they seem to make no difference to my seasonal allergies.
Now please don't think that I don't know that I am very fortunate. There are so many people who are in much worse situations -- people who are so much sicker. I have a great family to take care of me and some people have no one. I am blessed.
Next week I am going to go to stay with Casey for a couple of days. It will be nice to get to spend time with her and JW. "We" are going to decorate the baby's room - that means Casey and JW are and I am going to watch. Casey has promised me a special dinner of stuffed peppers. Yum!
Tomorrow my little brother is cooking lunch for all of us. I am looking forward to having some of his ham. He is an excellent cook.
Happy Mother's Day to all.
My heart rate is running high 90s - low 100s at rest. In the past Dr. Haddadin has said that is too fast. I don't know what he will decide to do - he may insist I try a new medication. I feel better overall on what I am taking, but will defer to him to decide what is best in 2 more weeks.
How do I feel? - I get sharp pains in my head that only last for a minute or so. I get severe muscle cramps all over my body but they are less frequent than when I was taking Multaq. At times I shake all over. When I stand up I sometimes get very unsteady, and sometimes everything goes black. Walking to the bathroom makes my heart race. My body is so tired but my brain won't shut off to let me sleep. At times I am very nauseated. My nose swells shut at times. I itch all over. I get rashes. My eyes water constantly. My feet look like balloons - so does my face, and I have a Buddha belly from the prednisone.
As for anaphylaxis, the last one was Wednesday night around midnight. I did ok after using my Epipen, extra Benadryl and prednisone.
My internal medicine doctor signed paperwork for me to get a handicap parking placard. Now if on the rare occasion that I decide I want to go in a store or restaurant I won't have to be hauled so far across parking lots in a wheelchair. It will make it much easier for who ever is driving me. Kristen is the best wheelchair motor so far. She is so patient. It is very rare that I leave the house anyway because I am so afraid of getting exposed to something and going into anaphylaxis in a public place. It is bad enough at home, but it really freaks people out when they don't understand what is happening.
Scott is having a really hard time with his back. He was unable to make it to work 2 days last week.
I miss being independent. I miss going to work. I miss my friends. I really hate that I can no longer go jump in the car and take off for where ever I want to go. As much as I hated housework, I would love to be able to just mop the floor or clean the bathroom.
So - what do I do to keep from going insane? Not much at the moment - watching TV mainly. Facebook. Ravelry. Dreaming of my grandson. Petting my dog. Watching birds and squirrels outside my house. Knitting a little bit. I try to sit outside a little bit each day but I get really congested. It is amazing that I can get congested with the amount of medications I take, but they seem to make no difference to my seasonal allergies.
Now please don't think that I don't know that I am very fortunate. There are so many people who are in much worse situations -- people who are so much sicker. I have a great family to take care of me and some people have no one. I am blessed.
Next week I am going to go to stay with Casey for a couple of days. It will be nice to get to spend time with her and JW. "We" are going to decorate the baby's room - that means Casey and JW are and I am going to watch. Casey has promised me a special dinner of stuffed peppers. Yum!
Tomorrow my little brother is cooking lunch for all of us. I am looking forward to having some of his ham. He is an excellent cook.
Happy Mother's Day to all.
Wednesday, May 4, 2011
Unwell
It seems that there is no miracle with diltiazem. Enough to make my heart slow down makes my blood pressure too low. Low blood pressure feels awful - dizzy and weak. It feels like you are trying to walk through thick mud.
I finished Book 12 - an audiobook - The Collectors by David Baldacci.
It is a pretty good book. The characters are rare book collectors who get into some trouble with espionage.
I finished Book 12 - an audiobook - The Collectors by David Baldacci.
Saturday, April 30, 2011
Feeling Better
The nausea is gone. Diarrhea is gone. Muscle cramping has decreased. YEAH!
But I had forgotten how easy it was to get my heart rate high enough to cause chest pain on diltiazem. So even though I feel good just sitting around, it is extremely difficult to do anything without getting short of breath and chest pain. It is great to feel good when I am sitting though. :)
A very sad post was on the IA support group board today. A 14 year old girl was diagnosed. She was asking how to deal with the fear of dying. I really don't know how to answer a question like that to a 14 year old. I know that everything feels so much more intense at that age. She is at the point I was about a year ago, and it was devastating to me. Dr. Ford helped me so much - he told me how I was going to feel when I was still in denial. This poor girl goes to a school in Illinois where they don't even have a nurse. She has to administer her own Epipen and call her mother. I don't know many teenagers who could administer their own Epipen. Keep this girl in your prayers - her name is Amber.
But I had forgotten how easy it was to get my heart rate high enough to cause chest pain on diltiazem. So even though I feel good just sitting around, it is extremely difficult to do anything without getting short of breath and chest pain. It is great to feel good when I am sitting though. :)
A very sad post was on the IA support group board today. A 14 year old girl was diagnosed. She was asking how to deal with the fear of dying. I really don't know how to answer a question like that to a 14 year old. I know that everything feels so much more intense at that age. She is at the point I was about a year ago, and it was devastating to me. Dr. Ford helped me so much - he told me how I was going to feel when I was still in denial. This poor girl goes to a school in Illinois where they don't even have a nurse. She has to administer her own Epipen and call her mother. I don't know many teenagers who could administer their own Epipen. Keep this girl in your prayers - her name is Amber.
Thursday, April 28, 2011
A Day with the Docs
Good one first - Casey's checkup went great. The little guy was moving around like crazy and doing well.
For me - nothing good.
Immunology - I had read about another immunosuppressive drug that had been tried on 6 steroid depended IA patients, with 3 being able to come off steroids completely. It was a study done in 2003. Unfortunately Dr. Krish does not feel; 1) that I am stable enough to try anything experimental, 2) that it will work for me, 3)that the side effects are worth the benefit. He added Allegra to my meds and I am to stop trying to further reduce my steroid dose.
Cardiology - Due to the side effects, I am off Multaq. I am going back on diltiazem. You may wonder why I am going back on a medication that didn't work the first time. 1) My blood pressure did better on it. 2) I felt better overall on it than any other med we have tried for the tachycardia. We doubled my Lasix dose because of my continued swelling and also doubled my potassium dose. - What next? Pray that for some reason the diltiazem miraculously works this time. Other options - possibly trying other antiarrythmic drugs, but side effects may be a problem. Amiodarone is still an option if I am just not doing well enough on diltiazem.
Overall this means I can expect really no significant changes other than hopefully having less rashes with the addition of Allegra and less swelling with the increased diuretics. Dr. Haddadin says that I may have built a tolerance to loop diuretics because I have been on them for many years. If increasing doses of Lasix doesn't work then he is going to try Demadex.
We made it through the storms with no damage to our trees. It is amazing to drive through Doe Valley. Trees are down everywhere.
For me - nothing good.
Immunology - I had read about another immunosuppressive drug that had been tried on 6 steroid depended IA patients, with 3 being able to come off steroids completely. It was a study done in 2003. Unfortunately Dr. Krish does not feel; 1) that I am stable enough to try anything experimental, 2) that it will work for me, 3)that the side effects are worth the benefit. He added Allegra to my meds and I am to stop trying to further reduce my steroid dose.
Cardiology - Due to the side effects, I am off Multaq. I am going back on diltiazem. You may wonder why I am going back on a medication that didn't work the first time. 1) My blood pressure did better on it. 2) I felt better overall on it than any other med we have tried for the tachycardia. We doubled my Lasix dose because of my continued swelling and also doubled my potassium dose. - What next? Pray that for some reason the diltiazem miraculously works this time. Other options - possibly trying other antiarrythmic drugs, but side effects may be a problem. Amiodarone is still an option if I am just not doing well enough on diltiazem.
Overall this means I can expect really no significant changes other than hopefully having less rashes with the addition of Allegra and less swelling with the increased diuretics. Dr. Haddadin says that I may have built a tolerance to loop diuretics because I have been on them for many years. If increasing doses of Lasix doesn't work then he is going to try Demadex.
We made it through the storms with no damage to our trees. It is amazing to drive through Doe Valley. Trees are down everywhere.
Saturday, April 23, 2011
One Year
Today is the one year anniversary of my first hospitalization for anaphylaxis. Things sure have gone down hill from there. I think I could deal with the anaphylaxis if I could just get to a point that I was able to do things for myself again. It is discouraging that a whole year has gone by and I am further from being well than I was then.
Book 11 of 2011 is St. Dale. It was a very entertaining book but if you know nothing about NASCAR I don't think it would be very interesting. It is set in the Southeast with visits to many local racetracks. This was a loan from my sister-in-law who is a huge fan of Sharyn McCrumb.
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