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.
]]>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.
]]>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.
]]>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 …
]]>Dr G thought to test me for HHV6 antibodies. I have elevated levels of them. Dr H put me on an antiviral. I got nervous about this and wasn't clear enought to ask the right questions during the appointment. I associated antivirals with AIDS. I worried for a day until I could get to my computer to check it out. It seems that 95% of people have the HHV6 virus; it just stays dormant most of the time. When the immune system weakens, as when it fights chronic Lyme, the virus multiplies. Then the immune system is further taxed trying to fight HHV6 as well as Lyme.
It also took me awhile to find out that I only have to the antiviral for 15 days. Since I expect to be on antibiotics for many months, I assume that same for the antiviral. I'm on day 6 and have been experiencing the side effect of agitation and itchiness. My palms and soles of my feet itch and my right eye itches. The skin around my eye is rough and puffy from my rubbing it. I read the information sheet on the drug but it didn't sink in until the side effects hit and I woke up in the middle of the night to read the sheet again. Now, I hope that once I finish the medication my eye will stop itching and return to normal.
Dr H did neurological tests on me and was absolutely astounded by how well I have responded to the antibiotics. At my first exam when I tried to walk heel to toe with my eyes closed, he had to catch me as a lurched over. This time, I could actually do it.
Gotta go, K needs my help putting N to sleep.
]]>I lucked out and got appointments with Dr H, Dr S and Dr G all within one week of each other. No wonder I felt overwhelmed. They're all outstanding docs. I still have not decided which one not to see. I saw Dr S again last Tuesday. I got test results. I didn't test positive for any co-infections which is great news. My SPECT scan was normal which indicates that the Lyme spirochetes have not entered my central nervous system and that the neurological symptoms are in my peripheral nervous system. This is also great news because it is tough to get antibiotics across the blood-brain barrier.
It seems that I have developed antibodies to thyroid hormone and am low in thyroid. Dr S wants to put me on synthroid. I'm averse to taking synthetic hormones since I've been so bought in to the alternative healing world. However, the alternative docs have also prescribed progesterone. Granted it's grown in animals but I've heard negative things about the analogous thyroid hormone grown in animals, armour. I drove an hour north too see my "old" chiropractor. He suggested some natural extracts from animal glands. (This was before I got the test results showing my low in thyroid.) I prefer natural and I trust this guy a lot however I felt scared after I left. Somehow his concern for me turned into fear on my part. Also, natural extracts (especially bovine) have a potential to harbor prions - the cause of BSE or mad cow disease.
I also have to keep in mind that I may not be on thyroid forever. Lyme can cause low thyroid in which case curing Lyme will help. Many women develop low thyroid after pregnancy. If that's the case, I may be on thyroid for the rest of my life.
A contact from long ago (friend of an ex with whom I had a messy break-up) had a formulating pharmacy make thyroid hormone which was released in small amounts that more closely resemble the natural system. Maybe it's time to cross that bridge. I'll decide after I ask Drs G and H, on Thursday and Saturday, respectively.
Sometimes I feel caught between the world of natural healing and that of Western medcine. I grew up eating organic foods and whole grains, a true California girl. My Mom avoided antibiotics and I have, too. Now they have the potential to give me back my life. My mind is open enough to know when heavy artillary is necessary. The challenge comes when there are provocative alternatives. I have not yet met a doctor who has experience with both. Like all of us, docs make the best choices they can, and then develop experience based on those choices. It's up to me as a consumer of medicine to decide how to proceed. I use some combination of intuition, scientific knowledge and trust in the doc make my choice.
On the Mommy front, K and I decided that N's daycare no longer seemed appropriate. We selected it on a recommendation from a neighbor. I didn't interview any others since I was so wiped out by Lyme and caring for N. N had bad diaper rash from teething so he needed to be changed frequently. Three days in a row he had a poopy diaper when we picked him up from daycare. The last day I saw a group of children standing in front of the provider. N was near tears. The provider was so involved in what she was doing that she didn't tend to N. I took N out to the car and realized the problem. I took him back in and told them the problem. They changed him on a low table in front of all the other kids. He was crying and his bottom was seeping blood (I had fed him food that was too acidic-Mommy mistake). I felt that the situation was humiliating.
I had always had my doubts about whether the daycare was a good match. And for some people it might be fine. K had been able to solve problems with them when I could not however in the past couple of weeks, K had started to question the care N was receiving. We decided that night to pull him out.
So I've added daycare search to my list of things to do. And I don't have daycare to give me the time to do it! These are the choices we make. We chose to pull N from the daycare immediately and now I have the difficulty stemming from that choice. K has been extra-supportive so he is taking his share of the responsibility. I'm glad I married a man who has doesn't have a rigid sense of gender roles.
That could take me off on an entirely different subject so I'll close here.
]]>Currently, I’m deciding amongst three hot Lyme docs in my area. Dr S, Dr G and Dr H. I’m lucky I have such great docs from whom to choose and a PCP, Dr R, who is very, very helpful. The wait list for Dr S is 9 months long so I’m using all my connections to try to see him sooner. I have an appointment with Dr G in early April and I’m on the list for cancellations. Dr H’s office called today and I can go in for an appointment as soon as Thursday.
I want to get treated as soon as I can even if that means switching doctors in the middle. If I can go see Dr H soon, then Dr R can order any tests and maybe start me on antibiotics. Oh, to be treated for the disease I actually have. I spent six months injecting myself with beta-interferons one day out of every week and feeling like I had the flu one day out of every week – muscle aches, head ache, brain fog. It was horrible. And now I know that it wasn’t helping me and might even have been hurting me.
If I had Multiple Sclerosis, especially if it was atypical, I would have myself tested for Lyme Disease periodically just to be sure. And at a good lab, too. There are labs that specialize in Lyme testing.
I just finished talking with my husband, K, about timing of doctor visits. He has a flu and so does N. I feel challenged to balance my responsibilities as a wife and mother with my drive to get treatment going. (And the fact that we’ll be changing to a PPO health insurance in April so I want to get as much covered under the HMO in the next two months-MRI, SPECT, antibiotics, IV.) I have been so absorbed with reading about LD that N has not been getting the usual level of attention from me, plus he’s sick and needs more TLC. When he’s sick, he can’t go to daycare and that means I don’t have time to do research and so forth. K and I talked it out. It’s easy to get obsessed about all this. I just remembered to breathe. Deep breaths help me a lot. Well, my 9:30-time-for-bed alarm went off so that’ll do it for now.
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