I read this post that was shared on the Meniere’s Resources page on Facebook and it really struck me how much I fake being well enough to do things, and I’m sure you all do too. So many people think we fake being sick; if they only understood that we fake being well just to be around them, especially this time of year.
A little bit of a catch-up as to what’s going on in my little corner of the world, besides, if I don’t write it down, how will I ever remember?
I got the results from the x-rays of my neck, it basically says I have Degenerative cervical spondylosis (often referred to as degenerative arthritis) with narrowing of C5-C6, retrolisthesis (the posterior or backward slippage of a vertebra) of C5 on C6, and bilateral neural foraminal encroachment (spinal nerve root is compressed on both sides) at this same level more extensive on the left.
I went in on Monday and got my injection. They did the injection between C7 and T1, a little to the right, because my right arm is the one that bothers me the most. When the nurse took me back to the procedure room I told her how nervous I was because of my hearing loss and Stuart couldn’t be back there. Since losing my hearing it’s very hard to have procedures BEHIND me without Stuart there to help me. She reassured me over and over that they would take good care of me. I had her tell me everything they would be doing, and I felt a bit more at ease. The doctor came in, this is the first time I met him, I only saw his assistant before, he asked if I could hear him at all and I tole him Yes, but after I lie down and he is behind me it will be garbled and I will have a very hard time. He seemed to understand. Obviously he didn’t, because it was horrible. He talked with his assistant the entire time, it sounded like just chit-chat but I can’t be sure because I couldn’t understand anything that was being said. I had no idea when he spoke to me. I didn’t know when he was going to stick me, nothing. I was terrified he was telling me to be very still or to move or something and I was not able to understand. When it was over I didn’t even know. I was confused if it was time for me to get up. When I sat up the nurse was there and asked if I was alright and I said, “I do not feel taken care of” and I burst into tears. I explained what happened and she said how sorry she was and that it should not have happened that way. I got myself together and went back to my room to get my IV out and leave. The doctor came out and made sure to catch me before I left and apologized. He was very nice and told me that he talks because it calms him, he was very sorry and it will never happen again. We will make sure we have a better way to communicate. I left feeling much better, and I was proud of myself for speaking up. In the past I would have held it in and gotten out of there as fast as I could and simply not gone back. Now they were educated and I had a much better experience.
Unfortunately, the shot hasn’t worked. I’ve seen no evidence of any change. We will have to try something else. I go back the day before Thanksgiving for a follow up, we’ll discuss the next steps then.
Now for an update on the psych side of things. I still haven’t gotten approval from my insurance company for the ketamine. They came back saying I needed to try TMS (Transcranial Magnetic Stimulation) first, so my doctor’s office had to send back explaining that I can’t do that because of my cochlear implants. Of course, it takes the insurance company forever to come back with an answer. Geez. On the up side though, the new antidepressant she put me on, Fetzima, is doing some good. I’m not back to my normal self, but I’m not feeling like I’m in the deepest darkest depths of despair either. I saw my psychiatrist on Wednesday and we increased the dosage, I’m hoping it will bring me up a bit more. She told me to watch out for side effects, as it can cause headaches. I asked her, “How would I know?” I was being kind of serious, like, would they be different than this constant thing I have now? or what? But she said, “I guess you wouldn’t.” Well damn. Now how do I know if my migraine is actually getting better but this drug is causing me to have a headache?
We have been constantly looking for houses, trying our best to find just the right house for us before our lease is up. We can move into Stuart’s father’s house, but that means we’ll need to move twice. We thought about renovating the family home, but we don’t really want to live there forever, so we are still searching for a place to call our own. Crossing fingers and toes that a house we saw this week will turn out to be the one. We might just have a very magical Christmas.
Speaking of holidays, is there anything more stressful than trying to organize a holiday meal with people won’t tell you what they will and will not eat until you tell them what you are making and then they just say, “Oh I can’t eat that”, or “The kids won’t eat that”? Ugh! I used to really want to have a family holiday, but boy oh boy is it a pain in the butt. They can’t afford to do much, so we thought we’d do everything, but I couldn’t get anyone to tell me what they would eat. I swear you just can’t please some people. So they are bringing food too, we will have way too much food for 7 people, about half of it, I can’t eat. When we lived in NC we used to have an “orphans” Thanksgiving. We’d have a big meal with a bunch of people who had no where to go for the holiday. It was always so much fun. We’d often play games after dinner and talk for hours. I don’t know anyone like that here, of course, I don’t know many people here.
To make things much less stressful for Thanksgiving I ordered our meal from Wholefoods. I’m adding another vegetable, a desert, and some cookies. That’s all the cooking I’m going to do, and I love baking, so that’s not stressful. I also make my cookies in batches, I simply freeze the dough and cook it later. Also, if I can’t do it, it’s not a big deal, the meal is taken care of, and the other half of the family is bringing a pie, so everything is covered. I find, the trick to surviving the holidays when you are chronically ill is to have all your bases covered in case you can’t do the things you want to get done. Don’t over extend yourself. Rest often and don’t eat too much junk. Try to keep your normal schedule if you can. You might want to increase some of your supplements. I increase my vitamin C, D, and Zinc during the winter.
How do you survive the holidays? Any tips you want to share?
Today we are officially canceling Christmas dinner. We were supposed to be hosting dinner for the family at our house this Saturday night, but plans needed to be changed because of my health. It was hard for me to admit it at first, but finally I realized, even if, by some miracle, I could get it all done, I would not be well enough to enjoy it. The probability that I’d end up in bed during the whole thing was high. So, as I prepared to have a “talk” about cancelling Christmas with Stuart, he proceeded to tell me that he felt we needed to do so. So glad we are a team.
For years now we’ve worked at making Christmas our own. We stepped back from the hustle and bustle and spent time together doing our special things. This year, we are in much closer proximity to his family and I really wanted to do something special for his dad, so Christmas dinner was planned. Then I got sicker and sicker with a UTI and more, and suddenly this Christmas started to feel like an albatross around my neck. I desperately wanted it, but my health simply did not agree, and I’ve come to understand that it’s perfectly okay to cancel plans when you need to. If anyone is disappointed or upset because of this change of plans, then I’m not sure I’d want them at my house anyway. (We are going to try to do the dinner on the 29th, but if I can’t, I can’t. Playing that one by ear.)
I feel like this whole experience has made me get back to my mindfulness practice, and Buddhist studies (I consider myself Buddhist inspired). Letting go of the plans for Christmas, not focusing on what may be with my health, just living life moment to moment as best I can, that is where I like to be, I feel like I lost that somewhere along the way.
For the past year I’ve had this bracelet that helps you meditate, it is based on Mala beads, but on a much smaller scale. Mine has 21 beads, where a true Mala has 108. Mala beads are used to count mantras when meditating, I think if it kind of like a Rosary. I have used mine at times when I have a few moments to meditate, I simply hold a bead between my fingers and take a deep breath in and out and then move on to the next bead. Sometimes I’ll focus on counting, or a single word or phrase. It has helped me with anxiety and being centered. I realized just how much I had gotten away from my mindfulness practice when I stopped using my beads. Recently I had a mammogram and I had to take my jewelry off, I had almost everything off already, Stuart was holding it for me, but I had my beads on. I had to take them off, so I put them with my clothes. When I got home I realized I didn’t have my beads. They are very inexpensive and don’t look like much, so no one would have saved it. I was devastated. I had just started using it again and it was helping me through this tough time, and suddenly it was gone. I ordered a new one, but it was different. It didn’t feel right. This week Stuart surprised me with a new one just like my old one. I will be using it often now, I’m so very glad I found this way of simply letting the world go for a little bit. I often get anxious when meditating because I can’t tell how much time has passed, by counting my beads, I have a know that completing one round is a good amount of time, I used to be afraid I’d look at the clock and only a minute had passed, this is a perfect solution.
Another tool I’ve used for a long time that I’m using more often now is chanting. This is not for everyone, some find it much more religiously centered. I don’t really. I do try to practice the Buddha’s teachings, but I don’t feel I really know enough to call myself a Buddhist. I try not to talk about religion on my blog, I respect one and all. I feel we all have the same basic beliefs, we want to be happy and want the same for others. In other words, do good and good comes back to you. I think you should do good no matter what, but again, I’m getting off subject. (and at this time in I’m not sure how many people agree with any of that)
About the chanting. I learned a chant when I was taking yoga, many moons ago, and it stuck with me. Whenever I have a bad spell Stuart and I will chant this chant.
Oṃ bhūr bhuvaḥ svaḥ
tát savitúr váreṇyaṃ
bhárgo devásya dhīmahi
dhíyo yó naḥ pracodáyāt
(O) Supreme one; (who is) the physical, astral (and) causal worlds (himself).
(you are) the source of all, deserving all worship
(O) radiant, divine one; (we) meditate (upon you)
Propel our Intellect (towards liberation or freedom)
I can’t really remember how to pronounce the last two stanzas, but we know the first two by heart and I find them very comforting when I’m in a lot a pain, or having vertigo so very bad. It doesn’t really matter to me what the meaning is, it’s the chant itself that helps. When in pain I chant this and sway back and forth, it honestly helps. Since I had the akathesia side effects last Spring I rock myself to sleep. I simply cannot be still. Since I’ve been so sick, I find myself repeating this mantra every night. That or the Lord’s prayer, which is kind of funny to me.
The next 2 paragraphs are all about my current health condition, feel free to skip it, but if you are interested, here goes:
As many of you will know from my previous post, I’ve been fighting a UTI since late November. I’ve been through 3 rounds of antibiotics and I had another infection from a cyst removal on my scalp that still hasn’t healed. (that procedure was done the third week of November, over a month now). You may also recall that I’ve been going through a Bipolar mixed stated mania phase, and had to change my medication a couple of times. Yesterday I saw the doctor again. I was running a fever, but not incredibly high. My pulse and BP were a little high, nothing worrisome. I have been having severe stomach pain with retching (very little vomiting, just heaving horribly) and the nausea has been so severe, I just can’t express that feeling. My bladder and back still hurt. She also checked my wound and it is still draining, but it’s yellow now. ewww. She’s a little concerned about the possibility of sepsis, since I have infections in 2 places that haven’t healed, but I don’t have that high of a temperature and I should be either vomiting or having diarrhea, and I’m having neither. I’m had my blood drawn just in case. I also had a urninalisis, so far it shows that my UTI is clearing, but I have blood in my urine, so I go to have a kidney/bladder ultrasound tomorrow morning. (At 11:30 in the morning, after no food or drink for 8 hours then drinking at least 32 oz of water before the test without peeing. Talk about torture.)
She thinks this has all probably been caused by adding too many medications at one time and they didn’t play nice together. Stopping the antibiotics will hopefully set it straight. Of course, that wouldn’t explain the blood in my urine, but why worry, it is what it is.
*the first image was created using imgflip.com the second image comes from https://chopra.com/articles/the-benefits-and-uses-of-mala-beads I believe each are open source photos.