“Healing is an art. It takes time. It takes practice. It takes love.”
Being present, being in the moment can be difficult when in physical pain. To transcend that barrier; to be aware of breath and heartbeat over the noise of pain synapses. When the levels of my physical pain increase, as they have of late, I struggle to own my pain, rather than it owning me.
Helping Wendy with Mindfulness Mondays is therapeutic; choosing a topic; searching out the quotes; formulating the post – all help me focus, to remember to breath.
I hope this week’s Mindfulness Monday quotes help you be mindful of the pain and of the moment.
“Some people think that to be strong is to never feel pain. In reality, the strongest people are the ones who feel it, understand it, accept it.”
“Mindfulness can play a big role in transforming our experience with pain and other difficulties; it allows us to recognize the authenticity of the distress and yet not be overwhelmed by it.”
“Chronic pain or other challenges are invitations; gifts that challenge us to learn how to manage the mind.”
I know you can normally find Mindfulness Monday here each week, I tried, but I haven’t been able to write much and I thought I’d explain why. (it has taken me many days to write this post, so bare with me…mmmkay?)
You may recall that I had De Quervain’s tenosynovitisin my left wrist/thumb earlier this year (you can read about it here), but you may have missed that I now have it in my right wrist. The left wrist was treated with a cortisone shot and since then I’ve had no problem. I’ve had 2 cortisone injections in my right wrist and I’m still in pain. (you can see pictures from the first injection here) I had the second shot on my birthday (July 2nd) my wrist felt better the first day after the injection, but by the second day I was back to the original symptoms and by the 3rd day it was actually worse. When I went in for the second injection he gave me the option of having surgery or trying the injection again, he told me that if it didn’t work to just call and schedule the surgery I didn’t even need to come in again. So I chose to try the injection again, to say those injections are not pleasant is a huge understatement, but I was really hoping to avoid surgery. After a week, when it was evident that the shot didn’t work, we called to set up the surgery and were told that it was too soon after the injection, I have to wait 4-6 weeks. I was not a happy person. I have a lot of limitations because of this issues; I can’t write or draw, I have extreme difficulty brushing my hair, typing, cooking, picking things up with my right hand, swimming…I’ve wearing a brace that holds my wrist and thumb stable, if I don’t wear the brace, I can’t do much at all…unfortunately the brace has started to cause issues on it’s own,
so I have to stop wearing it. The good news is that the surgery is almost always successful, and it’s very minimally invasive, in fact they often do it with local anesthesia. (I will admit I’m a bit intimidated by that, I don’t want to see them cut on my arm…ewww, but I also hate going under general anesthesia, so we’ll see) I was having a hard time accepting that fact that they were making me wait for the surgery, honestly I was pretty pissed; then I remembered that the way to happiness is acceptance. I decided to look at the whole situation differently. It’s only a few weeks difference, they aren’t saying I have to be stuck like this forever. I stated taking extra supplements that are supposed to help with joint and inflammation issues, hopefully this will reduce the swelling and some pain. (if you’re interested I’m taking extra turmeric, collagen, glucosamine..I think that’s all) Even though I’ll still need surgery, if the swelling is down, it should help with recovery. Accepting this situation made life a bit happier.
On another note, I’m having increased migraines, often with migraine associated vertigo, and cluster headaches. When we first got here my head actually felt better, but that didn’t last long. Bright lights are a big trigger for me and it’s really bright here, more than that, now it’s monsoon season so the barometric pressure has been all over the place with crazy storms almost every day, my head is definitely feeling it.
I’m also having a lot more cluster headaches and I don’t have anything to help them. I saw a new headache specialist about 3 weeks ago, I wrote about it here. I felt optimistic after that visit, but I haven’t received the gammaCore that he prescribed, it was supposed to arrive in about 5 days. We called to find out the status and no one called back, so we called again, and still no call back. I know that the office was moving but that doesn’t excuse them from paying attention to their patients. **Update** They called late yesterday and it seems that the doctor didn’t have us fill out a form that he should have, so it delayed everything. The nurse who called said she’s fill it all out and we could sign it the next time we are there, so the gammaCore is now on it’s way! I should receive it by the end of the week! Thank goodness. (the gammaCore treats both cluster headaches and migraines! again, Thank Goodness!!
So that’s what’s been keeping me away….along with other stress, but that’s for a different day when I can actually type without being in intense pain. Hunting and pecking with my left hand is not fun. 🙂
“Accept – then act.
Whatever the present moment contains,
Accept it as if you had chosen it.
Always work with it,
Not against it….
This will miraculously transform your whole life.”
In February sometime I started having wrist pain. On the inside of the wrist right below the thumb, I would have sharp pain with certain movements. It especially hurt to hold my phone or tablet. That caused a big issue since I draw on my tablet and I had a pet portrait I was working on. Luckily the portrait is for a friend who is also chronically ill, so she understands these things.
While at Urgent Care for another matter, a suspected UTI, I had the doctor take a look at my wrist and she said I had tendinitis and needed to rest it and it should be fine in a couple of weeks. I put it in a brace and waited. The pain and swelling got worse. After about 3 weeks, I went to see my primary care doctor. She took x-rays and they didn’t show anything. She referred me to a Hand Clinic. Of course, it took a couple of weeks to get in there and during that time, the pain got worse. The brace was not helping. The brace stopped me from flexing my wrist up and down, but not side to side, and that’s what was causing the most pain.
While I waited I kept doing research to try to figure out what was wrong. If you search for wrist pain, you will find carpel tunnel, and not much else., and I did not have the symptoms of carpel tunnel. You really have to dig to find other causes. Finally I found something that fit my symptoms – De Quervain’s tenosynovitis. There was even a simple little test to diagnosis it.
The Finkelstein test is performed by placing your thumb against your hand, making a fist with your fingers closed over your thumb, and then bending your wrist toward your little finger. If you have severe pain, you probably have De Quervain’s tenosynovits.
De Quervain’s tenosynovitis is inflammation of tendons on the side of the wrist at the base of the thumb. (see image left) So yes, a type of tendinitis, but not one that will get better with a brace.
Last week I saw the hand specialist and he confirmed my suspicions. I have DQ. He even drew a little picture explaining it. He told me the brace was useless, to just get rid of it. (freedom!) He said that a steroid injection in the affected area cures the condition 80% of the time, some people need a second injection, and very rarely it requires surgery to open the tunnel and make more room for the tendons.
So I got a shot. He tried to be gentle but, Oh boy did that hurt! He said I should feel some relief immediately because the shot has some numbing medication, and I would feel lasting relief in a day or two. If the pain comes back after a couple of months, I’ll need another injection. If it comes back after that, then I’ll need surgery.
I didn’t really feel the immediate relief he spoke of, but the next day it was like a light switch cut off. The pain was almost completely gone. By day two, I barely felt pain at all. Now, I’m still barely feeling any pain, every once in a while I’ll get a twinge, but that’s all. I’m amazed! After 2 months of intense pain, I had one shot and it’s gone! Wow, if only everything I had could be cured so easily. Yes, I know the pain could come back, but I’m taking this as a win!
What causes this? They aren’t exactly sure. It can be from repetitive motion using the wrist, like picking up a baby (I can’t tell you the last time I picked up a baby). It is often seen in new mothers and middle aged women. It could be caused by hormonal fluctuations, or other conditions like arthritis. Anything that causes swelling really. I’m thinking mine was caused by the way I was holding my tablet while drawing, it put a lot of pressure on my thumb and bent my wrist. I’ve since gotten a new computer and I don’t hold it like I was holding my tablet, so I’m hoping I don’t have a repeat of this.
Last night I was even able to finish my latest pet portrait.
What do you think?
* painting by W. Holcombe. All rights reserved. Do not use without permission.
This post is personal. No links to studies to back up what I’m saying. Nothing more than what is happening to me.
On March 22nd I had a migraine. Every day since March 27th, except 1, I’ve had a migraine. Yes, I’ve had a migraine for 43 days out of 44.
This is not a medication rebound headache. I have not taken medication for more than 15 days in a given month.
Can you imagine the days I haven’t used medication?
When I use medication I have Maxalt, Toradol, Toradol injections, …and well that’s about it for my rescue meds. I am on others that are supposed to help keep these buggers away, but as you can tell, it isn’t working.
I’ve gone through a DHE protocol of 3 shots for 3 days. During this time was the day I didn’t have a migraine. I still had a headache, but it wasn’t a migraine.
Why is this happening to me. Well I have a guess, but I don’t really know.
After I had my seizures my Neurologist told me that Topamax can cause seizures in some people. This medication is used to prevent migraines, but it is also used for seizures. So the thought is that the seizure drug I was on actually caused my seizures. I was on it for a long time before I got seizures, but there was this little hiccup problem with that medication right before I started having seizures that probably caused it to go crazy. Our mail order pharmacy didn’t fill my prescription on time. They had a problem with the prescription and didn’t tell anyone. Things got so crazy I was off of my med for over a week, it may have been close to 2, when I finally got my prescription I just started taking the full dose, I didn’t think about ramping up.
So I ramped down and got off the Topamax and the seizures stopped. I was off of the Topamax for less than a month when these migraines started. I normally have about 15 migraines a month, some months a little more. Very few months have I had less than 15. I used to think the Topamax didn’t do a lot to prevent my migraines, now I am pretty sure it did. Right now I’m so ready to go back on this drug. If I have a seizure I’ll stop it. (I wouldn’t say this if the seizures had been hurting me, but from all the tests, the only harm they cause if the twisting of my body.) Unfortunately, I kinda doubt my doctor will be willing to take this risk. Maybe there will be something better.
Today my neurologist called in another medication for me. I’m to have 2 more DHE shots and take this new medication right before I go to bed for 3 days. (I’m sorry I don’t remember what the medication is, I’ll find out when Stuart gets home with it.)
If this new medicine regimen doesn’t work I don’t know what the doctor will do. I’m lucky that my neurologist specializes in headaches. She actually runs a Headache Clinic. I’m confident we will be able to get these migraines under control. She won’t give up.
During this past month the vertigo has showed it’s ugly head again, but not as often as I would have thought. I do question if this vertigo was Migraine Associated Vertigo (MAV) . I’ve had a couple of attacks of rotational vertigo (where I see the world spinning around), most has been motion vertigo (where I feel as if I’m moving but I’m not). Rotational vertigo is by far the worse. I had a bought of that yesterday, but it wasn’t too bad. The world would spin for a few seconds then for hours I’d feel like I was moving or that when I moved I had absolutely no balance what so ever. Yesterday could have been MAV, I just don’t know. It was a very bad day. I woke with a Migraine at 9.5 on a 0-10 scale. This causes me a lot of stress, stress causes a Meniere’s attack, of course that causes vertigo. I’m leaning toward Meniere’s because my hearing was way off all day.
Most of the month I’ve been having motion vertigo, this was only the 3rd time I’ve had rotational vertigo. I’m not sure why the rotational vertigo has calmed down, but I’ll take it.
I haven’t been around so much this past week, because the pain is getting to me. I’m falling into Migraine Madness.
So, all my ramblings lead to one thing. My head HURTS.
“This is a sponsored post for The Fay Farm CBD Warming Muscle Rub. I have been compensated through the Chronic Illness Bloggers network. All opinions remain my own and I was in now way influenced by the company.”
I’ve never had a review or give away on my blog before, but when The Fay Farm asked me to try their Warming CBD Muscle Rub I thought, “Hey, that sounds really interesting! I bet my readers would love it.”
The rub was created by the co-owner for his mother who has Rheumatoid Arthritis, he told me that has allowed her to sleep through the night. I thought that was pretty cool, and so very nice.
I received my package a little over a month ago and I’ve been giving the Warming CBD Muscle Rub a try. I had been out for a bit the day I got the package and my neck was causing me a lot of pain, so I decided to try it out right away. I was very shocked when I put it on and the pain got better. Did it go away? No. But it got better! That’s a big thing for me.
I have degenerative discs in my neck, it has really been acting up lately and the pain from it has been more intense than normal. The pain is sharp, burning, stinging; all kinds of fun. It also causes the muscles surrounding that area to become very tense, of course intensifying the pain. The rub worked very well on the muscle pain, the pain right at the discs bit.
CBD oil is a key ingredient in cannabis (marijuana). Unlike THC (the ingredient in cannabis that gets you “high”), CBD does not cause a ‘high’. While this makes CBD a poor choice for recreational users, it gives the chemical a significant advantage as a medicine. CBD can come from regular cannabis plants or plants harvested for hemp. The CBD oil that comes from hemp is legal. The CBD oil that comes from regular cannabis plants is not legal in most states. The CBD oil found in The Fay Farm Warming Muscle Rub is hemp oil. Read more about Hemp Oil, here.
The organic ingredients are Sunflower, castor, herb- infused olive oil, beeswax, shea butter, menthol, camphor, 50mg CBD oil, cayenne pepper, arnica, essntial oils of rosemary, eucalyptus, peppermint, ginger, cassia, and clove.
From the ingredients I saw that most have some properties that can help relieve pain, like arnica and the cayenne pepper, ect. I’ve tried Arnica and things like Icy Hot, Capsacium cream or Tiger Balm… and thought they didn’t help as much as this CBD Muscle Rub.. During the past month I’ve tried Arnica and Tiger Balm again just to make sure, and yes The Fay Farm’s Warming CBD Muscle Rub does help me more than either of those. I even tried my prescription Voltaren Gel and felt the warming CBD rub helped more. I can really smell the cloves and other essential oils. Some might find the smell a bit strong, but I found it much more pleasant than things like Icy Hot. (I have to note here, I’m very sensitive to smells, this is a bit strong to me, but it isn’t artificial or really stinky, I haven’t had a problem with it. Hubby says it’s a light sent, he also agrees it’s not offensive. We both kinda like the smell.)
The rub is softer in viscosity than I thought it would be just looking at it. I thought it would have the consistency of petroleum jelly, but it is softer, smoother. When I first got it I put my fingers in to get some and I got a lot more than I intended. Now that I know the consistency it is very easy for me to use. I’m glad it doesn’t come in a tube because I never feel like I get all of the ingredients out of a tube, and if I happen to get too much on my finger I just scrape my finger over the side and put it back in the tin. You can’t do that with a tube.
Will it work for you, well only you can decide that, and since you are one of my readers you can receive 10% off your entire order and free shipping (in the U.S. only) by mentioning “Picnic” or “Ants” in the comments when you order you products! (When you add everything you want in your basket, just add ‘picnic’ or ‘ants’ in the comment section of the order form and you will get 10% off.) Yes, you get to take 10% off your whole order, not just CBD products, and the offer doesn’t expire. How cool is that??
They sent me a normal size and 2 sample sizes so I thought I’d share with 2 of you. I’m giving away two (2) .5 oz sample containers of The Fay Farm’s Warming CBD Muscle Rub. If you’d like to receive one of them, just leave me a comment and I’ll randomly pick the 2 names. (if you’d like to leave a comment but don’t want to enter, please let me know) That’s all there is to it. You have until April 29th to enter and I’ll announce the winner on May 1st. (sorry but this give away is only available to those in the continental US.)
I’ll also send the winners an email. Do not leave your email in your comment, I will get it from the information you supplied the first time you made a comment. If you don’t get an email, you can always check back here.
If I do not hear from the winners by May 6th, alternate winners will be picked.
I hope you enjoy the rub as much as I have, or more!
I saw the signs, I have so much going on, there are so many outside reasons….but I’m struggling….this is why I’ve been away so long, why my blog has been suffering, why I simply haven’t.
Today, I’m going to write, I have too much to write about, I am overwhelmed by how much I have to write about, but I need to…..
I didn’t expect to have vertigo almost all day the day before surgery.
I didn’t expect to have vertigo in the waiting room right before surgery.
I didn’t expect the intense pain after my surgery. During surgery the back injury that just got better was aggravated. I was not just dealing with surgery pain, the pain I expected, I was dealing with the back pain and severe sciatic pain. To make it worse, I couldn’t move to make the back and sciatic any better. I was stuck, in so much pain. We could not get this pain under control. I have issues with pain medication. Everything makes me hypersensitive, I feel like things are on me, it makes me itchy. So I was only prescribed Tylenol and Tramadol. This didn’t do it. They tried to put me on my side to help, this caused me so much pain I swear I wasn’t even in the room it was just pain. Luckily, it didn’t last long. I decided I’d rather itch. They tried Hydrocodone. nothing. I don’t know what all was tried. at 2am they tried Toradol, this is a NSAID given by IV or injection. I’ve had it for my migraines before. This finally worked. Probably in conjunction with everything else. I finally fell asleep. Only to be awoken at 4am to have my blood drawn. Then at 6am for something and at 7am because shifts changed….it was an exhausting. But I have to say, the night nurse who was trying to help me was absolutely wonderful, I couldn’t have asked for better care.
I didn’t expect to have low blood pressure, a magnesium deficiency, and have to stay another night.
I did get out of bed the first day and walk a little, I was told I did great. (the intense pain hadn’t started yet) I had my morning Physical Therapy on the second day and did well, even though I was a little dizzy. I didn’t expect to have a vertigo that afternoon. During my vertigo attack I had 3 different people come to work with me, including my Physical Therapist. No afternoon PT, no going home. They also had to make sure my pain was under control before I went home. It was better that night…but I had to sleep in a recliner, glad we bought one for me the right before I had my surgery. (ugly thing) I didn’t expect to HAVE to sleep in a chair for many nights after I got home. I didn’t expect to cry from the pain so much, after my surgery.
I didn’t expect my sister to come and help. I am very grateful. I didn’t expect it to be so hard for Stuart to stand back and allow someone to help. He said he’s just used to doing it, it’s hard to ask someone else to do things. Yep, I know that feeling. It’s very hard to ask others to do things. Especially, for me to ask for the little things. It’s hard to ask for things like something to drink, or a snack, to reach something for me, to get me a blanket if I’m cold….ect. Yep, I’m having a hard time asking for things too. I’ll ask for someone to go to the store, or do some laundry, things like that…..but it’s the little things that get me. It makes me feel so helpless. Eh…I guess I am. (I feel pretty weird having anyone other than Stuart do private things for me too…that is one of the hardest things I’ve had to deal with…one of the hardest)
I didn’t expect to have vertigo every day since my surgery.
I didn’t expect for Stuart to have to take off a second week from work. (I think he got in a little bit of work the second week…but not much.)
I didn’t expect…..
I didn’t expect to have a death in the family two days after my surgery. It was my extended family by marriage (my cousin’s daughter’s husband), I didn’t know him personally, but the circumstances of his death were hard….so very sad. He was young, in his late thirties. He was EMT on his way to work and pulled off and parked at a gas station, they found him slumped across the steering wheel dead. The autopsy has been inconclusive. There are still test out, but they don’t expect to find anything. They will probably have no idea why he died. They also found out a lot about him that his wife had no idea about, it is very, very sad. It also makes you think…..and think….
I didn’t expect for one of my father’s friends to die the next day. I knew him growing up. He worked with my father, they used to Barbeque (or barbecue in some parts) together. When I say Barbeque, I mean Southern Barbeque; a huge hog in a pit, slow roasted all night long….oh my it is good. We used to have picnics and things over at his farm. He let me touch my first cow, it was much softer than I thought it would be. He was 12 years younger than my father. As you get older you see more and more friends die, I wonder if my father is having a hard time with this? I’ve noticed he goes to a lot of funerals. That’s a subject that would be hard for me to broach with him.
I didn’t expect my friend Laurie from Hibernationnow’s Blog to die on April, 21st. She caught the flu in February and that just snowballed into more and more, she just got sicker and finally her body couldn’t take it any more and she died. I’m in complete in shock about her death. I keep looking for updates to her blog in my email. I look for her to chat with me on Facebook. I heard from her in some way nearly every day. It may not have been personally, but I always knew she was there. Now she’s not. Just like that….suddenly her voice is gone. Her thoughts are not in my life any more. Laurie fought fibromyalgia, she was quirky in ways and loved the color yellow, she loved the ocean, writing, and most of all her family. We were both foodies, and we both lost a dogs who left huge holes in our hearts, and later we both adopted rescue dogs who took over a new place in our hearts. The one thing we disagreed the most about was our feelings about the chef Alton Brown. She hated him, I love him…..it was quite a debate on one of her post! I will miss you Laurie. All the support and love you gave me, and our friendly banter. May you be pain-free in a nice warm place near the ocean taking a walk with your father.
I didn’t expect my dearest friend’s mother to die this week. She has been battling Amyotrophy Lateral Sclerosis (ALS, otherwise known as Lou Gehrig’s disease) for the past 9 months. I’m actually relieved she didn’t have to live in her body with her mind fully aware without being able to communicate with anyone for very long. I loved Kathy very much. I wanted so much to be there to help care for her. I wanted to be there for my friend and help her through this difficult time. Now I can’t be there for her again. The death of her mother is going to devastate my friend. She was closer to her than anyone. They talked daily. They were best friends. Her mother’s illness took a toll on the family. Yes, she will have a lot of people around her, but I know she needs her best friend. It is extremely hard not to be able to go. I am so tired of feeling useless. But this should not be about me, it should be about Kathy. She was such a strong woman. A single mother, raising 3 children mostly by herself. She was so generous and kind. She worked so hard and hard and hard….and she gave and gave and gave. This probably gave her more joy, but from my view I wish she had been able to take more time for her. She was just about to retire when she got sick. I know Kathy did have a good life, and celebrated life, but I also know she was looking forward to slowing down and just enjoying her grand children. Please don’t put off living until tomorrow. Kathy was one of the best people I knew. That sums it up pretty well.
I didn’t expect writing this post would make me feel better.
Throughout my journey having chronic illnesses I’ve fought hard to not allow my illnesses to define me. Yes they are a part of me, but they aren’t all of me. I worked hard to keep some sense of normalcy in my life…and to try my best to keep true to me.
I feel after everything that happened this past year….and not all of them had to do with my illnesses…I lost myself. I became the sick person. I stopped trying to be me. I stopped posting regularly, I stopped doing my art, I stopped cooking (partially because I had a dizzy spell while cooking and almost hurt myself, but I’ve been to scared to start back)….I’ve been living in fear and self loathing.
2012 was one of the hardest years I’ve lived through, (topped only by 1993, the year my mother died). I had 2 new chronic diagnoses, my dearest friend and constant companion of 19 years died (yes I am talking about Sandy), I had contact from someone I’ve loved unconditionally who I haven’t heard from in years and the correspondence was filled with hatred….just true and deep rooted hatred. It would be hard enough for me to deal with anyone hating me, but this person….well the wound cut deep. It’s so hard to explain. I don’t remember a lot of my life before I got my bipolar stable, and I’ve changed so much since I met and married my husband, and since I’ve been sick. I love me…me as a person.
But me as a person was lost. I didn’t realize it until we came to Tucson and I got so sick. Not just my normal chronic illnesses, but more and more. I had a cough that wouldn’t go away…I’m still coughing some. I finally saw the doctor, and I had bronchitis and Asthma. I was born with Asthma, so I’ve known it was there, but supposedly I’d “grown out of it”. I would have an attack if I got around someone with perfume on, or someone smoking, or around things I’m allergic to. But now, I’m dealing with it every day. And unfortunately, I had more vertigo attacks in November than I had the entire year combined. I’ve also been having a huge problem with my GI system. I know my food issues and I’m careful, but things sneak in….and I had no idea….still I’m having bowel issues. And I’m gaining weight. I’m back to being 5 pounds from my largest weight. And that’s way too much for my short body.
It has just been too much. More illnesses. More conflicts to deal with. More being stuck in bed. I got lost and didn’t even know it.
I was lying in bed recently and realized how much I hate me. No, I don’t hate me as a person, I actually like the person I’ve become. Adversity really does create good people. (and I think I am a good person) But, me…my body….I hate it. I’m larger than I want to be, or should be. I have no energy, I’m sick ALL THE TIME! I feel my body betrayed me. And I don’t want anyone to see me when I’m ill. When I do actually get to see someone, I try my best to look my best. I know this probably causes a bit of confusion for people, I don’t look sick when they see me, so how can I be so very sick. I remember one day when friend came to visit with her 2 children. I loved seeing them, but I started to feel very worn out and dizzy before they left. I tried so hard not to let them see. Soon it was time for them to leave, Stuart and I walked them to the door, arm in arm….and when the door was closed, I collapsed. But I couldn’t let her see. I think I’m afraid if people see how sick I am they will shun me, and I will lose all my friends. But really, I think I’ve lost most of them anyway. I’ve hidden away. And I don’t think I could stand for someone to see me really sick. I’d rather be with just Stuart than for others to feel uncomfortable because I’m sick. Gaining weight hasn’t helped. People expect sick people to be underweight. Instead I’ve gained about 60 pounds.
So, now that I know what has been happening to me, I am determined to get me back. The inner me. My blog was very important to me, but I allowed someone to scare me away from it. I can’t do that. I have to write and reach out to those who can help me and those whom I may be able to help. This is such an important part of me. My art has been an important part. I wanted to have something I did consistently….but I’ve failed…I need to get that back. I need to do something that is productive and useful. I’ve felt like a useless burden for too long. I found out about a few charities in my area who knit or crochet blankets, scarves….ect….for needy. One charity that really spoke to me is one that donates to foster children, so they will have something special that was made just for them. (as many of you may know, Stuart and I had planned to be foster parents but ended up not being able to because my illness got so much worse). Foster children hold a special place in our hearts. The charity I found makes items for foster children in a neighboring county, at some point I would like to see the same type of charity started for the county we live in.
So here’s the beginnings of a plan for me. Begin doing something that will make me feel more like I’m a contributing member of society, learn to love my body no matter what size it is or how sick it is, stop listening to old ghost from the past and hope they can move past their hate and find a happy life, learn more about dealing with my new diagnoses, and learn American sign language.
I didn’t mention, I haven’t been able to hear out of my right ear…with my hearing aid…for about a month. So we really need to learn ASL. We will be starting a class here in Tucson next week. It is a beginning conversation ASL class. We will miss the last couple of classes, but feel it will be worth while. This is through a Hard of Hearing and Deaf group, many of the members are deaf or severely hard of hearing, so I shouldn’t have a problem with not being able to hear in class. (Stuart talked to the teacher and she assured him it wouldn’t be a problem, and many people who have Cochlear Implants are members there too.
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.
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!
*first….I’m having trouble with my blog, I’ve written WordPress but don’t know what’s going on yet. I cannot post any images or tags. Sorry*
Last night I started on Diamox, per doctor Gray’s instructions. Still talking a little Topamax, I have to wean off of it.
I admit I still wasn’t feeling great in the evening, well I haven’t felt “great” for a long time, but I wasn’t feeling good. We decided to watch some things on Netflix because I was afraid to go to sleep. First we watched Donkey X, a silly animated movie about Don Quiote and Sancho as told by Sancho’s Donkey….OK…that’s the very short synopsis, but really that’s not why you are reading this post is it? Then we watched a number of old Dr. Who’s – the old one’s with Baker…if you are a geek/nerd type then you know Baker is the Doctor who had the very long scarf and the curly hair. (perhaps the most famous Doctor of all – unless you are under 20, then it would be David Tennet) – again, not why you are reading this post huh?
Finally, I decided to try to sleep. I have found I feel a bit better if I’m not lying flat. So I propped myself up a bit and I do believe I was asleep before my eyes were shut! I woke up about 4 1/2 hours later with a headache in about the 4 range. A 4! OK, for those of you who don’t realize what I’ve been going through (here is where I really wish I could post photos), I have been in the 7-9 range for days. Occasionally hitting a 6, and if I hit a 5 I was pretty doped up! I was so happy. I thought, “Yes, this is going to work!” Then I thought, “Well, this means I definitely have high pressure.” You see, if I didn’t have high CSF (cerebrospinal fluid pressure) this drug would have made me feel much worse, so I took a great risk taking it, but I was willing to try ANYTHING!
I decided, to try a little experiment and lower my head a bit, I woke up at about 9:30am, and my headache had climbed to about a 6, I should have taken a pain pill, but didn’t want to do that on an empty stomach. Unfortunately, I didn’t trust myself to go downstairs to get anything, and Stuart was too exhausted to get up yet. So I went back to sleep. When we woke again, my head was back to an 8. Stuart made me some breakfast. I ate, took my morning medications. Including the Diamox and the little bit of Topamax. Shortly afterward the world started to spin. Luckily, if I stayed very still on my right side it was almost still. So I dozed. But if I tried to move it went crazy again! (and oh how I had to go to the bathroom! Isn’t that always the way?) This last over 2 hours.
My headache has been around 7 -8 most of the day unless I took a Maxalt or Hydrocodone, then it would ease to a 4 or 5. But I feel much more dopey when I take those than I used to. I wonder if they Diamox makes them more potent, or if it’s just because I’m sleep deprived. Unfortunately, often when I try to sleep I start to spin. That just happened a little while ago. I gave up and decided to update all of you.
All and all, I take last night as a good sign. Perhaps we can get this medication worked out and I can at least get things under control enough so I can get out of bed! It’s horrible. I have 2 people living in my house and I haven’t seen them in days. I’m still lonely. It’s sad really. But it’s hard. People don’t want to intrude when I’m like this. I admit I don’t like for people to see me when I’m having a vertigo attack, or in horrible pain…but I am lonely. Thankfully, I do have Stuart, and he tries so hard to keep me entertained. : )
I’m not crazy about being on Diamox. The side effects aren’t fun. Well, two in particular. One is this tingling sensation. Kind of like when your hand or foot starts to go to sleep, but not quite..and it’s just an icky feeling. The other is brain fog. Often very intense brain fog. So we’ll have to see if I can deal with that.
I will say, either the Topamax or the Diamox (these two drugs are in the same class) is already reducing my appetite. Thank goodness, I needed that! I weighed in at the doctor’s on Wednesday at 200.9 lbs. I NEVER thought I’d ever see 200lbs. I’m only 5′ 4 1/2″. I do realize it was the day before I started my period, and I was fully clothed in jeans and tennis shoes, but that should only take away about 5lbs. I was happy today to feel like my appetite was much more back to normal. Ever since I started having trouble with this fructose intolerance I’ve been so hungry. Having cravings I just couldn’t satisfy. Top that off with not being able to exercise. I gained about 55 lbs. Now it’s time to take that off!
Anyone out there want a weight loss buddy? As soon as I can do any exercise at all I will be easing into something slowly. Stuart surprised me, he’s looking into getting a therapeutic pool. I don’t think we can afford it. But it sure would be nice. First things first, I need to get this vertigo under control first. Can’t be getting in water when I can’t see straight. : )
OK, as you can tell, I am sleep deprived and just rambling.
with no photos…my posts are a bit boring huh?
I leave you with this…..
Draw the Shades Today
Migraine Pain Robs One of light
New Meds Can Give Hope