Where have I been you ask? Or perhaps you haven’t noticed (don’t tell me, I want to think I was missed) I haven’t been commenting as much on other blogs, or chatting away on mine (I know for a while I’ve been a little silent here so you probably didn’t notice), I haven’t even been able to answer emails in a timely manner. I logged on today and I had over 230+ emails in my inbox. Normally there are about 30…so how many days has it been??
I’ve been much sicker, if that’s the word to use, lately. I’m not really sick, it’s my chronic stuff, plus a little oops added in. First I’ll tell about my oops.
I know in my last post 30 things you may not know….. I mentioned how hard it is for me to wash my hair. It’s normally easier in the bathtub than the shower (I’ve fallen too many times in the shower), but I’ve decided that my bathtub is evil. I’ve had heart palpitations in the tub and nearly passed out, I’ve slipped a few times trying to get out, once I smacked my head against the wall. My latest fight with the tub? I pulled the tendons in my left ankle, and knocked everything out of whack on that side from my foot to my lower back, while I was lying in the tub. Yes, I said, LYING IN THE TUB! Only me right? Ok, it was a little more than just lying still. I had scooted down in the tub to rinse my hair, then I pushed with my feet to scoot up – my left foot slipped and went in a direction it shouldn’t have. But I must say, it really didn’t hurt. When I got out of the tub I could stand fine as long as I didn’t go up on my toes. So I’m thinking, no big deal. Then Stuart looked at my ankle and said, “Oh My!”. My ankle was very swollen!! My lower back hurt, but my ankle really didn’t. If you touched the swollen area it hurt, but not much. This happened last Friday night. On Wednesday the swelling was down and I had a massage, she helped the leg and back, but last night my ankle was swollen again. (not that I’ve been on it, I had vertigo all day yesterday so I was in the bed.) So now you know. I am afraid of my tub and shower….makes it pretty hard to keep up personal hygiene, but I manage….thanks to that darling man of mine.
What else had been causing me frustration and just plan fear lately? I was supposed to have the Botox shots for my migraines on the 18th, my doctor was sick and they had to reschedule….they wanted to make the appointment in November! We are leaving for Tucson, AZ the last week on October, we won’t be here in November. So they scheduled it for October 20th…I cried. I had the worst time with migraines this past month. Right before my period started the pain started…they gave me special medication for that time of the month, it didn’t work. I had 15 days out of 20 were spent in a dark room, often without any hearing device on because the light and sound would make me throw up. Throw in some vertigo, and we have a great party going on. Luckily, the appointment has just been changed to October 3rd. This should be during my period, so it will be a real test. Big problem now? If it works I need to have another shot regimen in 3 months, we won’t be here. I’m not sure I can find a neurologist in Tucson who would be willing to see me just once to give me Botox injections. Actually, I doubt I will be able to, so it will be more like 5 months between injections.
Recently I’ve been having more vertigo, and constant disequilibrium. Frankly, it scares me. I’m pretty sure some of this is Cerebrospinal Fluid Pressure. We changed my medication that controls the high pressure to a times released form instead of the kind I have to take numerous times a day (I kept missing one). Since I’ve been on this new version of this medication I’ve been having symptoms like I did when my pressure was too low. I started back on the regular form of the medication yesterday, I hope this really is what’s wrong. Because the vertigo is scary. I’m proud of myself about how much better I’m dealing with it. I don’t panic as much, I’m sure I would if it was a severe attack. My biggest fear I have is that when a severe attack hits it will never end. I’ll give you an example of my days…Yesterday I woke up to the word spinning, slowly, but still spinning…this went on all day. Luckily, I was able to sleep through some of it. Then when it actually got to be bedtime, I couldn’t sleep. So many things going through my head. I kept thinking, something doesn’t add up….but I’m not sure what…at least I finished Uncle Tom’s Cabin…and still laid awake until 5am. Today, I’m not spinning, but I can’t walk straight. I can’t move my head at a normal speed or I will fall down from the disequilibrium. In the past 48 hours, I’ve been to the bathroom once unaided.
OK…I know this is another venting post. But I’m scared. What if the change in medication doesn’t work? Then why is this happening? We’ll figure it out, or I’ll learn to live with it! Right?
The other night I was talking to Stuart and told him that sometimes I envy people who don’t have to feel like I do. Of course, he said that’s natural, part of self-preservation and all that…. I then told him, I would gladly be the only person in the world who had to feel this way if no one else ever did. And I mean it. The thought that others go through this is heart breaking to me.
photo from smh.com.au
I do have some good news about my hearing! (unfortunately I had to cancel the last 3 appointments I’ve had with my audiologist because I was too ill to go, so I can’t tell you what she has to say, but I have some Wow! news.) Stuart got The Lorax DVD from Netflix and we curled up in bed and watched it on the computer. I used the direct link cable and linked the computer sound up to my processor. I didn’t expect to hear any better than I hear the TV, I thought I’d mostly read the movie, as usual (thank goodness for closed captioning!), but this was different! I heard the movie!! I heard the characters the way they were supposed to sound! I really heard it all, just right! Isn’t that amazing? That gives me hope that one day my CI will give me sounds that are normal. Right now, I hear better with it than my hearing aid, but sounds are a bit off, however, I understand things more. It’s coming along! And The Lorax is my new best friend!
Picnic with Ants 
I missed you. I know when you aren’t around you are not in a good place.
I can NOT NOT NOT NOT begin to imagine what you experience and still manage to write and read. I feel sorry for myself regularly and I’m highly functioning. YOU are the most inspiring person I know. You still have the ability to have humor and that is amazing.
with all my love,
j
The Lorax is one lucky lorax to have you for a best friend.
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Judith, Thank you so much. Stuart and I were talking today and I was just laughing…and I said to him, “I wonder how many people who feel as bad as I do laugh as much as I do?” Thank goodness for a spouse who understands the need for a good laugh. (I can’t believe the things we laugh about…we act like kids. Laughing about farts, and even when I had trouble getting my pants down in the bathroom we got tickled as he was trying to hold me up as I wobbled and helped me with my pants at the same time. I may have felt like throwing up, but it was still funny. What a picture we would have made!
And my favorite lately….me to him: “Did that come out of your butt??” Of course, that has become a favorite line for all sorts of things, but the original, I really thought he burped (hearing things differently with the new CI) and I looked at him and he covered his nose…that’s when I said….Did that come out of your butt? It was a really strange noise…and we laughed and laughed. I’m really amazed at how much I laugh. I can feel sorry for myself, especially times like this when I was feeling better, and now…what is going on? But, I soon snap out of it, and think….it could be worse, so figure out how to make it better, or at least tolerable. I think with Stuart there will always be a way.
I’m sorry I haven’t been to your blog in so long. I read some snippits in my email, but I miss the whole thing. Hope to look soon. hugs and thank you, you have no idea what your words mean to me. wendy
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Wendy, you know just the other day I said I ought to text you and see if I can offer to wash your hair. Today you crossed my mind so it must have been to tell me to watch my email for an update. Well, Good Goddess Almighty!!! I just want to find the way to give you the bestest most powerful healingest hugs ever!!! It’s too late for this time but next time you need a hair washing, Í’m your woman! You know to reach me honey. Love You
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Thank you so much Lisa. It may be a little late for the hair washing, but it’s not too late for the hug! : ) You know it might be easier to wash my hair if it wasn’t almost to my butt, but I haven’t had it cut in over a year, and now it’s one thing I find lovely about myself. Even if it is a pain in the behind to wash….but really, washing short hair would be a pain too, it’s the temperature difference on my head….and I think now, it’s a lot of the fear…I need to get over that! Would love to see you soon. Many people I wouldn’t say that to considering I’m in the bed a lot lately, but I don’t mind if you visit me in bed! hehehe Good ole’ girl talk.
love to you my friend w
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So very sorry to hear things aren’t going better by now. Total bummer!! I don’t know how you do it. Hang in there!! You’ve been missed, lady. 🙂
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As J/J said, “YOU are the most inspiring person I know. You still have the ability to have humor and that is amazing.” I concur; I don’t think I’d be able to cope with a fraction of what you deal with daily; you really are inspiring for anyone with chronic illness/chronic pain
I firmly believe that there is something “healing” in Dr. Suess: “I heard it in a box; heard it with a fox . . . my name is CI, CI I am. (Can you eat green eggs and ham?)”
Hope the change in meds, the botox (will you look years younger afterwards, lol), other adjustments, the lorax and the laughter helps.
And Tuscon for the winter! (I almost wrote Tuscany!); hope the climate is very agreeable to your health.
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Thank you Phylor. I don’t know how amazing I am…but I’m working hard to get out of this dip I’m in. I can walk today unaided! Am even going downstairs for dinner! I have a doctor’s appt. tomorrow, so I know I’ll get out of the house! : )
Yes, I do believe I could eat green eggs and ham…I could eat them in a box……with a fox…but I don’t like lox. hahahaha I am CI, CI I am.
I’m feeling much better today. hugs w
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Reading your reply on the 26th — hope the dr. appointment went well, and your dip is just a blip!
There are road signs in Canada (probably in US, too) that say “dip,” and somewhere I have a hilarious photo of a friend standing under the sign making a very “dippy” face!
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I’m happy to hear about the CI. Sad to hear about all the other health issues. Have you tried putting a shower chair in the shower and tub? I think standing can be dangerous. Sitting in water is not safe either. What do you think? Do you have a handheld shower so you can sit and shower? Take care and stay safe, Edie
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Edith, Funny thing, I have tried a shower chair, and I fell off of it. I’m better in the tub, or in the shower with hubby. He’s always in the bathroom with me now, and notices when things start to bother me before I do sometimes.
It’s the temperature change and the motion of my head to tilt back a bit. I hate water in my eyes, but I can’t close my eyes when I’m washing my hair, it makes me sick. We do the best we can. Looks like I may be getting a shorter hairdo soon. I’ve been losing a lot of hair, people look at me and think I’m crazy if I say that, yes, my hair is almost to my butt, however, look at the top back and you will find it is very thin and often shows a bald spot. The doctors are tying to figure out why. I had a ton of blood test run yesterday. I come from a long line of people with thick hair, on both sides. My father is 79 years old and has a full head of hair. So….hopefully they can figure it out. But I’m ready to get rid of the locks. I have been for a while, but I’m nervous about letting someone cut my hair. My mother was a hairdresser and always cut my hair, I’ve not been comfortable with anyone since she died. And now that it’s this long, it’s very difficult. My husband loves the length, and truthfully, if it was thicker, I’d love to just get it shaped up, but I’m losing hair so much, I find hair everywhere. You would think I was going through Chemo. My mother didn’t even lose all her hair during chemo….and never lost her eyebrows or anything. My eyebrows are even thin. They say none of my meds cause this. It just kills me when they say, Stress can cause it. Well, it’s been thinning for years, it’s just getting worse. That’s why we tested my thyroid in the first place. (yes I’m hypothyroid, and they checked my levels again yesterday…we’ll see, but it’s never grown back….it just keeps getting worse.) Just another thing….maybe they will figure it out, if not, I’ll try to get a hair style won’t show it as bad. (but I don’t want to give up my pony tail for days I can’t do anything to my hair….decisions, decisions.)
Thank you for the suggestion. I can see how a shower chair can help many, it just didn’t help me. For one thing, or shower is too small, and the tub is separate. I do have a hand held shower head, I have sat on the shower floor and Stuart wets and rinses my hair. He will wash it, but he tangles it too much. : )
as always, thank you! w
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I have been thinking of you often… I just want you to know that. It sounds like things have not been very good for you. 😦 I like when you give updates so I know that you are doing ok… if that is even the proper word.
Much love to you my friend. ♥
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bipolarmuse: Thank you. I think of you often too…and read most of your post in my email. I owe my blog so many posts. Feeling a bit overwhelmed right now getting over my bad spell, getting ready for our long trip, and well, just life I guess. But I am feeling better. Will hopefully post an update, today! hugs to you my friend. wendy
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