Main » April 2005
April 27, 2005
Blowing Up
I just can't take it any more. I'm waiting for my liver to recover so I can get back on antibiotics. While I've been off antibiotics Lyme rage has been a huge part of my life. This week, my 23-month old is teething, he got a cold, I got the cold and I foolishly exposed myself to my evil sister. She's a nut case. And Mom is a nut case with her. Mom had agreed to watch N on Fridays. She actually did that for 3 weeks. Then my sister wanted to come and visit her and have Mom watch her kids while she got her hair cut. Evidently they don't have good haircutters where my sister lives (or good babysitters, or good housecleaners, or libraries that are clean enuf to check out books from, or employees who are good enuf etc.). My Mom doesn't seem to understand that it might be more important to support the me, the daughter who is ill and treats her well, instead of abondoning her commitment to me in order that the daughter who has literally spit in her face can get her fancy hair cut 2-1/2 hours from home. I am so pissed.
I'm also so tired of holding things together around the house. To be fair, I'm living off my husband's money and he is working in a terrible job however he passed up a really great job because he was too foolish to follow through and he imported a car from Europe for about twice as much as it's actually worth and it's been in the US in the importation process for 8 months. In the meantime, he drives my nice reliable Honda (coupe, too hard for me to get my son in and out of) and I drive the Volvo wagon that he bought even though it has been in an accident. The Volvo wagon has spent so much time in the shop. I never new a car could be that unreliable. So I drive my son for his nap in my Dad's old diesel and it was a hot day so I had the window down and I inhaled diesel and immediately after that got a sore throat. Metal pieces in the broken down seat poke me and threaten to rip my clothes. It shimmies so badly that it cannot be safely driven on the freeway. The speedometer doesn't work. I have the press the brake to the floor in order to get it to work. My husband really needs to grow up and make some good choices given our situation with me ill.
And I have spent years in therapy learning to be more calm and clear. And three weeks off antibiotics shows me that the vast majority of my "psychological" "psychiatric" issues have been due to undiagnosed Lyme! And that is probably why I'm having such a hard time of it right now. The f***ing spirochete that the AMA refuses to treat properly. If I had had a proper Lyme test in 2001 when the diagnosed me with MS, I wouldn't be going through this now.
And I feel so isolated. I can't get out with N because I don't have the energy. So I'm basically housebound. I have the few friends from before I moved in with my husband and, to be fair, a few more but I miss people contact - adult people.
Yesterday, N's first day back in daycare, I was sick so I tried to take it easy. I ended up starting the Social Security Disability process. How on earth do they expect me to tell them every doctor I've seen for this. They want dates, first appointment, last appointment, next appointment. It's insane. I didn't exactly take the day off, did I?
I'll have a psychiatrist appointment on Tuesday so that will help. And I have a doctor's appointment tomorrow. And hopefully the Lyme writer's group will start May 17th. I need that really badly. I think I'm going to have to skip doing the profile for the newsletter this two month period. It's due on May 15th and I haven't even checked my tape recorder to see if it's working so I can interview someone, let alone transcribe the tape and write the article. And plan a second birthday party for my son. I just hate it that he has to be affected by this.
And I'm so ready in my psyche to start my new career in writing however circumstances conspire to thwart me right now. I'm still holding fast to my dream of writing about every day heroes, about the triumphs that never make the news, about people growing through adversity so that many people can learn and be inspired by their stories. I'm winding down.
Time to go to bed :-( Tired.
Posted by LymeMom at 8:08 PM | Comments (3) | TrackBack
April 11, 2005
ER Follow-up
I turns out that the liver toxicity is the focus now. I'm off all pharmaceuticals until my liver function is back up again. Dr G wants me tested every three to four days until my liver function is back up again. We went through all my supplements giving them a yay or nay as to whether I could continue taking them until my liver function comes back up again.
Dr G also wants me off the doxycycline - the nice cheap med that insurance will cover and that taxes my liver. She recommends intramuscular injections of penecillin once a week. After about three of these I might be able to inject myself at home. Evidently the injections are deep in the muscle for 7 minutes duration. This is also when the insurance companies start to balk. Bummer. I want my doxy. Who would ever have thought that Ms Organic would be wanting her antibiotics.
I found out about all this while at the Monday Night Macrobiotic Dinners. Dr. G called me on K's cell phone and I bolted out to a quiet place to talk. The rest of the dinner it seemed that people were asking me about Lyme or about the article I wrote about the head chef. By the time dinner was over, K was really angry. He had taken care of N all dinner long while I was chatting with people. This is one of those times that's rough. I totally understood why K was angry. And, I have so little contact with the outside world since I have so little energy to get out of the house. K couldn't talk to his friend tonight but they could meet for lunch during the work week. I don't have the luxury. We each have good intentions but child rearing is taxing and with Lyme on top of it, it's just tough on everyone.
On the plus side, one of the folks I spoke with has a business where his employees are exposed to ticks and he wanted my feedback on how best to protect their health and that of his clients. K suggested working at the beach instead of in land.
The other good news is the my energy is really up again. I attribute this to being off the doxy thus stopping the Herx which was triggered by my lowered immune system due to the drop in estrogen prior to ovulation and exacerbated by my liver problem. Sheesh! That seems to be a complicated chain of events.
And I was told that the editor of a magazine would like me to write some profiles at a week-long event. That felt good. It's hard to fathom that I could have a week away. Maybe K and N could come along.
Oh, and I found out about a local Lyme writer's group. Yippee!
It's late and I have e-mails to send and research to do so that's all for now.
Posted by LymeMom at 9:44 PM | TrackBack
ER Visit
This weekend was a whirlwind. We spent Saturday morning and afternoon in the ER. Grandpa S came down to watch N at the park nearby. Instead of a solution to the low blood pressure issue, I found out that my liver is starting to be compromised. I read all the patient leaflets on my prescriptions and stopped taking the ones that hurt my liver. My doc had already taken me off the doxy and I took myself off the sleeping med. Thus, here I sit typing away. Have to go for an echocardiogram on Monday. I'll also speak with Dr. G on the phone Monday evening.
I drank a liter of water yesterday. Between that and salt pills my blood volume should be higher making for higher blood pressure. Even so, yesterday morning I still had an "episode." It was shorter and less intense. Hopefully this morning will be even better. I'm writing this at 2 am because I can't sleep. One of the meds I stopped is the one that helps me sleep.
I felt a bit doomed today that my health would just spiral down. Later in the day I realized that this is probably just one of the downs on the roller coaster ride and with the help of my docs, I'll be back up again.
On Friday, I went to a new acupuncturist. I worked with Dr. M in a local health food store when I was a teenager. He seemed very knowlegable about my situation and supplementation and integration with Chinese Medicine. I felt much better after the treatment. He made some supplement recommendations I want to check out with Dr. G.
Posted by LymeMom at 2:09 AM | Comments (1) | TrackBack
April 8, 2005
Low Blood Pressure
I'm feeling emotional tonight because it's been a long day. The upshot is that I'm having more health issues. This morning and yesterday morning my blood pressure was so low that I had to lie on the floor and was breathing really hard to try to get oxygen. If it happens again, my doc says I have to go to the ER and get an EKG and an echocardiogram. It may be a Herx reaction (due to antibiotics killing the Lyme) or maybe I'm allergic to one of my medications. Tonight I figured that I might even be allergic to the benadryl I'm taking to fight the allergic reaction. Ugh! I just keep trying to remember that I like the roller coaster of a life truly lived better than the merry go round of a safe life.
Posted by LymeMom at 2:07 AM | TrackBack
April 7, 2005
Feelings While Coming off Valtrex
Well, it's time for a post that talks about how I feel instead of details of treatment.
I feel isolated, isolated, isolated. Since we're still searching for a new daycare for our 22-month old, N, I am home every weekday taking care of him. While I adore the little guy, I'm not the type to relish spending every day alone with a child. I need adult stimulation. Not only that but I didn't realize that N would take more physical energy as he got older - duh! As a result of the Lyme fatigue, I'm lucky if I can walk N down to library for story hour once a week let alone meet other Moms for playdates.
This is all coming at a time when I feel so ready to advancing my writing career. I phoned K to come home an hour early from work today. He made some phone calls to possible daycare providers. I felt a bit uplifted at progress being made. I felt like I was wading through quicksand to call the providers on the last list we got from the county.
I have been feeling depressed. It's takes so much effort to get good food on the table for dinner and that used to be my creative outlet. I love cooking. I think I'm just building up more fatigue each week I'm home with N. Eventually we'll find a good daycare and I'll have my two days to do interviews and write profiles and visit various doctors.
That said, I am also grateful that I have a loving, supportive husband, a beautiful son, a lovely home with a beautiful garden, organic food to cook, parents nearby (mind just recently agreed to watch Nathan on Fridays at their house), the health and abilities I do have (I'm not in pain anymore, I can watch my son while we look for new day care.) I get care from awesome doctors, too. I have my first appointment with a new acupuncturist tomorrow. I think that will be a great way to build my immune system.
All for now …
