spring visit

Last spring my sister brought my mother home to live with her. Mom has dementia and needed surgery.  It was very traumatic for her and she went home with Sis to recuperate. Now she lives with Sis full time. It has been up and down for everyone. After a year with only one short visit here for Mom so a new bathroom could be retrofitted at my sister's, Mom has pretty much been in the same place. She has come to rely on Sis for pretty much everything. So after a year, Sis needed to have a few days for herself and Mom came here for a few days.

It is amazing the improvement and decline that has happened at the same time. Dementia is an unforgiving disease. We have spent a lot of time researching. The theory we have come up with is that there may be a link to Mom's tuberculosis from back when she was younger. Her physical health is pretty good, but her anxiety over little things tend to over shadow everything else in her life. It actually looks like she is afraid to be happy.

The loss of joy is the most heart braking for me. The disease has robbed my mother of joy. She struggles to find a positive energy in her day and is unable to articulate this to others. The phrase, "does not compute" takes on a new meaning.

We must learn to keep things light and relaxed when Mom visits. I understand now that direction may be needed and stubbornness overcome in the most gentle way.

My feelings are all over the place and difficult to put down here. Part stress, part frustration, part sadness, sometimes impatience, sometimes acceptance. Fear of the unknown for everyone manifests itself now and then. Faith in human strength to overcome and accept what 'is' keeps me going. Being patient with myself and all of the conflicting emotions can be challenging. So I will vent here and re-read and hope that I become a stronger, kinder, better human being..

We have spent the last month or so eating right, sleeping as well as we can and putting one foot in front of the other.
I was able to tolerate the antibiotics for only 32 days. Drat! By day 24 or 25 my stomach began to rebel. Within only a few more days I was unable to leave the house and on day 33 I had to stop. I am so disappointed. I am still trying to get my digestive tract back to normal. 
Not certain if it was the antibiotic or the supplements, but my head was clearer and my joint pain better. I had a wicked headache the first couple of weeks, but that had gotten better as well. 
It has been about a week now and I am finding a return of joint pain and headache, although not as severe as before. My ears are ringing more than normal and it is more than annoying. I need to get my body back to normal and correct some now physical issues before I can try to take the antibiotic again. 
The results for the blood tests came in the mail and, as I was warned by the doctor, I can't seem to figure out what they mean. At my appointment she said we could call or email once we received the results and she would explain them to me. I have emailed twice and called and left a message asking for her to call or email an explanation of the tests, but it has been a couple of weeks now and she has not responded. I am discouraged. 
Appointments for acupuncture have been the thing that is keeping me going but that may have to end soon. The expense will be too much if I can't work a little to be able to afford it.
Other people must have difficulties like this, there must be some way to treat this more effectively. Perhaps I am just being a baby. That would be the easiest explanation. 
I am not going to give up. Perhaps a second opinion would help. There may be a way to get the antibiotics to work without the complete devastation of the rest of my system. The doctor not getting back in touch with me is so very discouraging. Does it mean that there is nothing wrong with me? Does it mean she is so busy that I am not sick enough for her to respond? Or perhaps something awful has happened in her life and she is unable to follow up. Sigh. I was hoping for a more hopeful report by now. 
Part of me says that the medicine may have been helping, but then the other part of me says that I was wishing so hard that a couple of good days got blown out of proportion.
So folks, I am back to square one and once my system finds it's norm, I hope to have more to report. 
Not giving up, just not sure which fork in the road to take. 

So upon retirement of my previous princessandthepeatg blog I am creating this new blog to try and sort out the craziness of my life and times. I may repost my original posts from princessandthepeatg and then try to move on from there, filling in the blanks and trying to expand and expound upon said past posts. Ha! I hope to keep the line drawn between the subject matter in my ifucanbeadit blog and this. It may take me awhile so be patient. Today we finally, (five months after the initial call) had an appointment with an infectious disease doctor in hopes of kicking the effects of lyme disease in the pants once and for all. I will begin a new adventure of antibiotics (yuck) diet choices and supplements. This will be an exciting (okay, probably not) time. But seriously, I hope to journal this attempt to find wellness and relief for myself and for anyone else looking to find someone else out there who is struggling with this crazy thing. This goes back to a yearly family outing the first week in July of 2012. I probably picked up the teeny tiny bugger then and within a few days I was felled like Goliath. I had made a fast trip to visit my Mom and sister and on the drive home experienced a searing pain in my head. I became almost instantly hyper sensitive to light. Now I have had migraine headaches for probably more than 40 years and this was a new experience for me. One of these headaches generally hit after an hour or so of "aura", blindspots and numbness. It was a long ride home that day. I went to bed and pretty much stayed there for the next three days.I began to hurt all over. On Monday after trying to find relief with over the counter and prescription pain relievers I gave in to my husband's urging and decided it was time to go to the ER. As I rolled over to get out of bed my husband noticed a large Bull's eye rash on my upper right shoulder. Hm. Could this be part of what was happening to me? On to the ER where they did a CT scan and tried intravenous pain medication pretty much to no avail. The doctor's did not seem to make the connection between the rash and the pain and I did not know that this type of pain was related to Lyme disease. I was sent home without a prescription for antibiotic for the lyme. It finally came 2 days later from the NPA at my primary care practice. In between I had a session with my acupuncturist who used a bleeding needle and cupping to draw some of the poison from the bull's eye rash. Within about 4 hours the body aches began to abate. The terrible headache and neck stiffness remained. It would be much longer, and many more acupuncture treatments, before that would be relieved. The next six weeks passed with me in bed and in the dark pretty much all the time. When I got up I wore huge dark glasses over my own prescription glasses. I was a vision! Missing the bridal shower for my new future daughter-in-law brought me to tears. A very sad day for me. As time went on I improved some here and there. I was able to be a part of the wedding in September so I felt like I was finally on the mend. A wonderful weekend full of love and laughter and Ridiculous Amounts of Joy. I was there and even danced, A LOT! Autumn came and I was still struggling to recover. Acupuncture helped, the medicine helped, but something just wasn't jelling. I had been on a list to see a doctor who specialized in Lyme disease, but there were no openings anywhere in the near future. Still exhausted at the least little thing, trying to exercise a bit and get on with life, but still coping with a stiff neck and headache and joint pain in my shoulders, hips and knees. Now be aware that I was diagnosed with fibromyalgia more than 20 years ago, but I can honestly say that this new adventure was different in many ways. Holidays came and went with much family and fun. Lots of wonderful food and good company. We are so grateful for all of this. But, I just kept feeling worse and worse. Finally an appointment opening and I met with the doctor today, more than 5 months from the beginning of this. Blood has been drawn and sent for testing. Lots of testing, lots of vials, lots of hope. I will begin a new regime of antibiotics tomorrow. Pro-biotics and supplements and watching my diet to see if we can get a handle on this teeny tiny monster. Today for the first time in a long time I felt some hope. I am determined to beat this crazy thing. This is not a terminal illness, others are suffering so much more than me. I am grateful every moment that I may be getting the tools to regain my health. So I will rant and rave here about what I learn about how to achieve this goal. The good the bad and the hopefully amusing and hopeful. There is much to learn. Share your experiences with me here. Give me advice. Tell me a knock-knock joke. Life is good and we are going to enjoy the ride.