My life disABLED with Chronic Ilnnesses, it just IS. Taking one moment at a time.
I'm taking a journey learning to live a mindful and happy life, while living with Chronic Illnesses.
I'm a bit of an idealist. I want everyone to be happy and think everyone should want the same for others. I don’t understand mean people. I cry easily and laugh often. I love cartoons, Dr. Who, and my wonderful husband...not in that order!
The day started out okay. I could have slept longer but Kiki decided it was time to play, and who can argue with that face?
It was a normal morning, I had my breakfast, took my meds and thought about what I could accomplish today. I only had 3 things I wanted to get done 1- spend some time outside, 2- fill out insurance information for cochlear implant replacement, 3- do my new exercises.
Out of the 3 the exercises were the most important, so I decided to do that first. Then I looked down at the floor and thought, “There is no way I’m getting on that dirty carpet and have my allergies go crazy again, I’ll vacuum it first.” So, I picked up everything on the floor, moved things around, pulled out the vacuum and vacuumed our small living room. It was going well, then right before I finished I had a shooting pain through my head, the room spun and got dark, I had a hot flush, got nauseous, and had to sit down fast. Another vestibular migraine.
The pain lessened in intensity in a relatively short period of time, but I’ve had continuous other symptoms throughout the day. I feel awful and can’t trust my balance at all, so I basically spent the day curled up in my chair watching Netflix (I saw a talk by Brene’ Brown and an episode of Queer Eye) then I watched cooking shows (which made me want to bake bread and make my own crackers.) Have I mentioned I’m obsessed with The Great British Bake Off? I watch it over and over, can’t wait for a new season to come to the US. Oh, it’s called The Great British Baking Show in the US if anyone is interested.
Now I’m off to bed, having only accomplished, let’s see, nothing on my list for today; and that’s perfectly okay. I got the living room vacuumed!
I do believe the new antidepressant must be working, 2 weeks ago having a day like today would have made me feel worthless, useless, and filled with dread. Today I can take it for what it is, life at this moment. Nothing more, nothing less. I guess it was a good day after all.
I missed writing yesterday, it was such a full day I just didn’t get it in.
Before my painting class with my niece I decided to take a Maxalt, and a couple of toradol with a little caffeine to see if I could get this migraine to a level where I could not only be present for the day, but also enjoy it a little. The pain did get to a more tolerable level, and after an hour I took the 2nd dose of Maxalt (if the pain doesn’t subside with a first dose you are supposed to take a second, I normally don’t because I don’t want to run out of my medication too soon, but on special days I will), after the second dose the pain was reduced more! Yay. The class was fun. I was sad because I cannot understand most of what my niece says, she speaks very quietly most of the time and does not move her mouth much at all. I’d love to be the aunt she could whisper too and tell secrets, but I can’t hear most of what she says. It makes me so sad. It did bother me that I did not get a thank you at the end of the day, I wasn’t surprised, that saddens me too. I do think she had a good time, though.
After our painting class we went out for pizza with the family. It’s always a mixture of emotions when I spend time with Stuart’s family. I like the feeling of family, but it can be a bit too much for me all at one time, and Stuart’s sister is very boisterous. I can only take her in small doses. We had to go back over to their house for some things after lunch so my time with her was close to hitting it’s limit before we left, and I was starting to have more pain.
When we left I was still feeling pretty good though and decided I did not want to waste it. I knew I might be pushing it a bit too much, but it’s a good chance that the next day could bring increased pain no matter what I do, so when I’m able, I’m taking advantage of it. I found out about this little clothing store that carries a style of clothing that I like so we went to check it out. Funny thing, I got 2 dresses, and neither one of them are in the style that I went there looking for. ha!
After that we were both bushed, but we wanted a treat so we got frozen yogurt before we went home and spent the evening watching baking shows and old Dr. Who’s.
Today I woke up feeling pretty good. Ate breakfast, picked up a few things around the house, then set out in the backyard to poopy scoop, something I haven’t done in a very long time and I’ve been feeling very guilty about it. I walked out and saw that the little rake and pan that I use to do it had been moved. “Oh no, my landlord felt the need to pick up my dog’s poop!” I felt so ashamed. I told Stuart and he said he wouldn’t feel bad if someone did that he’d just thank them. Ugh! I thought well no wonder stuff just accumulates on the porch and things are not put away….he feels no shame about things. Our back porch looks awful, he should be ashamed. So I told him so! Then I went out there and cleaned up the back porch! I moved and rearranged plastic totes (they are empty), I swept down the cob webs, I swept off all the totes and pool floats, I swept the porch (boy was there a lot of little mesquite leaves on there!), I wiped down the grill, and I got Stuart to get rid of the 2 cardboard boxed that were back there. Now my back porch looks all clean and organized, and we look like we take pride in our home. I am absolutely amazed at how much I can do when I’m mad! The amazing thing is, I could sweep like that and it didn’t hurt my back much at all, but have me stand at the kitchen counter and try to bake or cut up veggies and it hurts so bad it brings me to my knees. (Yes, I know the whole thing about feeling shame sounded snarky, I felt snarky at the time. I shouldn’t have gotten mad. I know a lot of my anger actually came from feeling that I can’t do my share to help keep up the house and the yard. Stuart and I talked about it, and he says he understands, I think he does, and I still think he needs to feel a little shame now and then. lol)
After all that adrenaline flew out of my body I fell into a heap in my chair and crashed. Then after about an hour I started seeing the world vibrating and going dim, I suddenly felt high but I hadn’t done anything to cause it, then the pain hit; a vestibular migraine had started. It wasn’t quite lunch time when I curled up ready for the end of the day.
I had a very full weekend, I got a lot of things done and had some fun, now for some sleep.
After the long day I had yesterday I was not surprised when I woke to find my symptoms had increased today.
My migraine pain fluctuated throughout the day between a 6 and a 9. The cognitive issues and fatigue increased. I’m so grateful I can get medical marijuana, it’s the only thing that is helping my pain right now. It’s far from perfect, for a number of reasons, but if I hadn’t had it today there’s a strong possibility I would have gone to the ER for help.
Since I’ve started keeping this journal, (yes all three days..lol..) each time I do one little thing I take a mental note of it so I can make sure to write about it. Because of that, I now have a list of my little victories for the day:
I picked up some dishes left in the livingroom and put them in the kitchen, started to put them in the dishwasher but, found I could only fit one in so I started the dishwasher.
I picked up a few things left sitting around the livingroom and put them away.
I emailed back and forth with my Advanced Bionics consumer specialist about my cochlear implant processors dying. Proud of myself for taking care if this without Stuart.
I fed my dog and gave her fresh water. (This requires bending over which is very hard for me today. Kiki would have waited for Stuart, but she would not have been a happy pup)
I started prepping for dinner. I cut the meat into bite size pieces, cut up the leaks, made the marinade, and put it all together. I even put all the stuff away and cleaned the knife and cutting board. (Stuart did the rest of the meal)
I brushed my hair. I brushed my teeth. I washed my face. I moisturized. I took my medication correctly all day.
There’s a number of things I didn’t get done, like get dressed, but that was so not important today.
Tomorrow morning I’m going to a painting class with my niece. I’m trying not to worry that I’ll have a severe migraine. I am determined to do this with her. I missed her birthday party, and this class was my gift to her. (She wanted to do something artsy with Aunt Wendy) I don’t normally feel like I have to push myself through no matter what, but I dont want to disappoint this child.
Please remember when reading this journal entry my cognitive abilities are a bit dulled right now. Also, This is the first time I’ve posted from my phone, I works.
It has been a very long day and I thought about not writing today, but the main reason I decided to post these journal entries here instead of writing them in a personal journal was to keep me accountable and keep me motivated, so here goes it.
My 3 day migraine broke about 10pm last night, so I was able to sleep well until 5am when I woke feeling a bit off and went to the bathroom when suddenly vertigo hit and so did the pain in my head. I had a vestibular migraine, with migraine associated vertigo. I’m not sure how long the vertigo lasted. I took my medication, and used medical marijuana to stop the vomiting and waited it out until I could go back to sleep. Stuart stayed with me and then worked from home to make sure I was okay. When I got up at 10am I no longer felt the effects of the vertigo, but the migraine was more intense. I ate breakfast hoping it would improve before my 1pm appointment, but by noon I decided I needed to take something. It took the edge off just enough that I was able to get through my appointment.
Now, about that appointment! I’ve been in physical therapy for my back and it simply hasn’t been helping so I decided to try something else. Someone recommended a woman who is a physical therapist who teaches therapeutic yoga. I’m working one on one with her. The first visit was very interesting. She showed me lots of photos of how muscles work together and we talked about how if certain muscles in one part of the body are not strong then other parts of the body will suffer. My hips and pelvic area are weak. She said that often when those muscles are weak it will cause pain in the back, especially when standing for a while, like mine does. She gave me some very simple exercises to focus on over the next couple of weeks then I go back in. I don’t know if this will help my back or not, but I know my whole pelvic area needs to be stronger so I’m going to work really hard on this. I’m really proud of myself for going to this appointment after waking with vertigo this morning, often that would cause me to be too afraid to do anything for the rest of the day. I was more off balance than normal, but I was determined, and since Stuart was able to take me I felt safe.
After that appointment we went and picked up my new glasses. I got new glasses a couple of weeks ago, but they made the lenses wrong. They had the focal point in the wrong spot so my progressives were not working at all. Now they are all fixed and I can see the computer. I’m not positive I like these new frames, it will take me a while to get used to them. They are SO different from my old ones. I went from dark bold statement frames to clear light weight frames. What a difference. I would post a picture, but I’m in bed. lol
We then went to Walgreens to pick up some prescriptions of mine and get some things straight they have messed up and I had a bit of a melt down. They really have messed up a few of my prescriptions, calling doctors for refills who I don’t see anymore, filling things I don’t need, prescriptions not showing up on line so I can manage them….So I had a list of things that needed to be discussed fixed, but I couldn’t hear anything in there so Stuart had to do the talking. I was trying so hard to follow what was being said, and he would ask me something and I’d try to answer and then I felt like he just dismissed me and half the things on my list were not addressed and it was just a mess. I ended up in tears and went to sit in the car. There has to be a better way for me to communicate the things I need.
I looked back at the situation and when we walked up there it was so noisy I got so overwhelmed told Stuart that I couldn’t hear so he would need to handle it for me. Right there, I gave up my control in the situation, but then I got upset when I felt like he “dismissed” me. When I started to feel like things were not being handled the way I wanted them to be, I should have spoken up and said something. Even though I couldn’t hear well enough, I should have made them slow down and help me understand, even it that meant they had to write it down. This is my healthcare, I need to be more assertive and stop being so afraid.
There’s something else I need to also look at with this situation though, I had a migraine. The pain had increased to a 7, it was harder to concentrate and focus, my vision was slightly blurred from the florescent lights and the right side of my face was tingling. I honestly don’t know if I would have spoken up if I had been migraine free, but I do think I need understand that migraine changes how you deal with life, and I need to give myself a break sometimes.
This month I’m going to do something very different, I’m going to try to keep a running journal of the month, so you might get a bit tired of me.
The idea behind this is two fold, I want to pay attention to my moods, and really see how this new antidepressant is working; and I also want to have a goal of accomplishing at least one thing a day, no matter how small that one thing is.
I’ve been feeling pretty low lately about how little I’ve been able to accomplish because of my pain, I want to prove to myself that I am more than my pain and accomplishments come in all sizes and all should be celebrated. I’m hoping by committing to posting about this on a regular basis I will force myself to stop thinking of the things I can’t do and pay attention to the things I can.
Today I woke with the continuation of a migraine from yesterday, that continued from the day before. I had an appointment with my therapist at 11am so I took a Maxalt and drank a little caffeine hoping it would take the edge off and make the day more bearable, unfortunately, it didn’t. In the waiting room there was a lady sitting directly in front of me and one sitting beside me, they obviously new each other and were having a conversation in normal tones. I was struck by the fact that I could not understand more than the rare word here and there despite the fact that it was a very quiet room. Once again I wondered how I could meet people and socialize. When I left I planned to go by the grocery store to pick up a couple of things but the pain was so great I thought I would throw up before I made it home. I took a second Maxalt when I got home, but again, it simply did not work. I decided to message my doctor and ask if there is another rescue medication I can try as Maxalt seems to have stopped working. I am still hopeful that the Emgality will help, but I need something to get me through the moment.
Today I made it to my therapist appointment! I had a lovely mindful moment with my dog, and a few other mindful moments too. I attempted to do a Body Scan meditation, but I didn’t finish. I will try to do it again before I sleep tonight.
I’m trying hard to not focus on the fact that I can’t cook dinner tonight, or get the dishes out of the sink because my back and head hurt so damn bad. So I’m avoiding the kitchen.
Recap. Let’s see, when last I left off we planned to go to Charleston, SC in September for our anniversary; there was a possibility we might have to move; and I was getting a hair cut. Turns out none of those things are happening or happened.
Trip. After researching a trip to Charleston it just didn’t seem like the smartest thing to do this year. The trip was going to cost us more than twice what we had originally budgeted for our trip to New Mexico, I’ve been to Charleston hundreds of times, Stuart really has little desire to visit there, we weren’t going to be able to see as many people as we’d like and still have a romantic trip…there were just too many things that said this was not the trip for us. We decided it would be best to take a second trip to specifically visit with family and friends, and we are going back to our original plans of going to Albuquerque and Santa Fe to celebrate our 15th anniversary.
Move. I’m relieved to say that we do not have to move, our landlords have decided not to sell the house right now. The house has a pool and the best time to sell is during the summer, there are a few things they want to do to the house before selling it and they wouldn’t have been able to get it done in time to get it one the market for the pool season, so they have decided to wait. That is a huge relief. Soon we’ll be house hunting. That can be fun, and or ahhhh. Hopefully, it won’t take long to find the perfect home for us.
Hair I ended up not getting my hair cut. It ended up being a not so good day and I just couldn’t go. I had been up most of the night with nausea, and when I don’t sleep the next day is precarious. I haven’t made a new appointment yet. I have a case of the nerves about it now. As much as my long hair is hard to wash and gets everywhere, it is very easy to just throw it in a pony tail, and I’m used to it. I think I’m a creature of habit. What if I really mess it up? When I was younger I’d think, “It’s hair, it will grow back” Now, my hair is much thinner, and I’m not too sure it will grow back. Damn I’m old. hahahah
Migraines. I’ve been on the new migraine preventative, Emgality, for a month now. I was told not to expect a reduction in migraines the first month. I talked with others and most on the boards noticed some difference. Here’s my experience:
In February I had NO migraine free days and took medication for 10 days (the maximum number of days allowed) . In March I had 2 migraine free days and took medication for 10 days. This month, I had 5 migraine free days, and I’ve taken meds for 7 days. This may not sound like much of a reduction, but I haven’t had 5 migraine free days in a month in as long as l can remember. My maximum free is normally 2, and I always take the medication for the maximum allowed number of days. This week I actually reached for a rescue med at the first sign of a migraine, like you are supposed to, instead of waiting until it hit an 8, because I wasn’t afraid I’d run out of allowed days before the end of the month. I took my second shot yesterday, cross fingers for me that May brings fewer migraines.
Bipolar Depression. This week I broke down and started a new antidepressant. I tried hard to pull myself out of this funk, this sadness, this feeling of utter worthlessness, but I haven’t been able to. I told myself it was situational, it wasn’t me, and I could get past it if I worked on it. I’ve been working with my therapist and I do have things in my life that can cause depression, but the situations, and my coping with them, are getting better, but the feelings aren’t. It’s time for a little help. I’m having very mixed emotions about this and I’m not sure why. I feel like I’m always going to be a bit off anyway. I’m never going to be normal. I’m always going to be bipolar. When do I stop and just say, this is how I am and it’s how I’m going to be. This is my normal. Live with it. No more medication tweaks. No more added medications. But I want to feel better.
Love the world as your own self; then you can truly care for all things.
Just feel the magic in the air and the power in the breeze, Feel the energy of the plants, the bushes and the trees, Let yourself be surrounded by nature at its best, Calm yourself, focus and let magic do the rest.
In all things of nature there is something of the marvelous.
The days are so beautiful this time of year, urging us to come outside and linger, yet we often get so distracted by everything going on inside that we miss what mother nature is trying to tell us. My allergies are keeping me indoors more than I’d like, but I’m taking time to sit by my window each day and taking note of how my surrounding are changing, each day seems to bring a new bloom, a new color. The flora in the desert is much different than I’m used to on the east coast. there, there are so many blossoms it is hard to appreciate the individual plants, the individual blooms. Here flowers are often found alone, or in small groups, but the blossoms are often bright and beautiful and standing out in all their glory. I can look across a field and see a single flower blooming that I know was not there the day before, it is wondrous. The cactuses are starting to bloom and that is just amazing! I hope all of you can take some time and take a nature break.
As I’ve wandered through the past couple of weeks I’ve realized how much I have strayed from my mindfulness practice and how much my Mindfulness Mondays helped keep me on track. Each Monday I was reminded how important mindfulness is and how to obtain it. It is time to refocus on this present moment with a few of my favorite quotes and a few photos from the desert.
Mindfulness isn’t difficult. We just need to remember to do it.
This quote is very meaningful for me right now as I remember how important mindfulness is, it is so easy to do, if only I remember to do it.
Mindfulness is simply being aware of what is happening right now without wishing it were different. -Enjoying the pleasant without holding on when it changes (which it will) -Being with the unpleasant without fearing it will always be this way. (which it won’t)
This quote by James Baraz is my all time favorite quote. Be with this day, whether it be pleasant or unpleasant, for it will always change.
Mindfulness means paying attention in a particular way; on purpose, in the present moment, and non-judgmentally.
What I love most about this quote is the last word, “non-judmentally”. I am notorious for judging myself very harshly, and it has held me back in many ways. Another quote by Jon Kabat-Zinn, in part, says “Instead of ‘let it go’ we should probably say ‘let it be'”. I need to just let it be, and stay in the moment.
I’m Still Here I didn’t mean to scare anyone with my last post, no I’m not closing my blog, I have just been feeling a little low lately and it’s been hard to put words together and write coherently. A little depression has gotten hold of me, but I’m coming out of it. I tried looking at everyone’s blogs today but my reader is not working right. I’ve been terribly homesick, I have a friend back home who has been extremely ill for months now and I can’t be there with her and it’s breaking my heart. I can only hope that my virtual support is helping a little. My sister hurt her knee pretty bad, I’d like to be there for her, but alas I can’t. I’m kinda sure that she wouldn’t allow anyone to take care of her, but I’d sure like to try. She’s taken care of me time and time again, it’s time for me to be the carer. And I really miss Spring in the Carolinas. Spring in the desert is beautiful in it’s own way, but it’s not like it is in the Southeast. There isn’t this sudden explosion of life everywhere! You open your door and flowers have bloomed overnight. Trees are suddenly green. It’s magical. I didn’t think I’d miss it so much, but I do. Stuart says he will miss the fall, so we have decided to go to Charleston, SC for our anniversary this year in September. Hopefully he can see a little bit of Fall weather, and we can see people we love. Looking forward to that makes me a bit less homesick and I think it helps my depression.
The Move and Service Dog About us moving…no we aren’t moving far away, we are still going to be in Tucson. This is just an inconvenience, but how we were told about it really pissed me off. Right now we are renting a house that we didn’t expect to be renting but a few months until we found a house to buy, but it ended up that we needed to wait a few months before we could commit to buying a house. We can start looking again in June…or July, I don’t remember which. Our landlord has been working on the guest house and told us he did not expect to have it completed by the time we would need to move. On Friday I was standing out by the pool talking with him for a long time about us going to meet with a dog breeder about getting a dog to train for my service dog, this has been in the works for a long time and he knew all about it, he has been excited for me. Nothing was mentioned about the possibility of then wanting to sell the house soon, or us having to move. That evening our utility bill was left on our door with a note on the envelope that said our lease ends April 30th and the guest house should be finished by then, so we need to discuss options. My stress meter jumped WAY HIGH! The thought of moving again and then having to move again a few months after that, simply threw me for a loop. I don’t blame them, it is a financial decision, not an emotional one, but it sure leaves us in a lurch. There is a possibility that we won’t have to move. They need to do some work on the house that may go into the summer, and they believe that if they don’t sell during the summer they will miss their window for the best profit because it has a pool. People don’t like to buy houses that have pools in the winter….weird. We will know in about a week, if we do have to move we’ll have at least a month to move. We will then have movers move our stuff to a storage locker and move into furnished corporate housing for a few months, that way it’s really only one move. We’d just just have our clothes and stuff, everything else would be packed and ready to go. After we came to that decision the stress was totally lifted. We decided to wait on getting a puppy right now to train, hopefully we can get one this winter. I’m still looking for just the right dog for me. I will be training my dog through HandiDogs here in Tucson, AZ. They are a hands on training facility helping you to train your own service dog. I will have a hearing and balance dog. I will talk more and more about this experience as it happens.
Migraine Specialist I saw a new neurologist who specializes in headaches. She was wonderful. She had read all of my chart before meeting me, she asked all kinds of questions that I can’t remember being asked before. Like “does sleep make your migraines go away?” I’ve had it suggested to me to try sleeping when I have a migraine, but no one has ever asked me if it worked. It doesn’t. I wonder what that means. She asked if I ever get a migraine when having a bowel movement. Sometimes. So many questions!! At the end of all the questions and realizing that I’ve tried everything out there and still have over 25 migraines a month we decided to try one of the new CGRP blocker migraine preventative medications. I chose Emgality because it has been shown to help cluster headaches too, but it is not approved by the FDA for that use yet. This medication comes in an injection that I give to myself with an autoinjector. I had the first dose on Friday, March 29th. I will write a post soon explaining more about what this medication is and my experiences with it. Please wish me luck with it. My doctor told me that her story is much like mine. I not only have chronic migraines, I have a constant daily headache that I’ve had since I was 11 years old, the day I first started my period I got a headache that never went away. My doctor told me that with this new medication she still gets migraines, she gets much fewer migraines, but she does get some. However, she no longer has her daily headache. At that moment I burst into tears. I was so thrilled for her, and the thought of not having pain every day constantly, I simply cannot fathom that.
On a completely different note, I’m getting my hair cut on Saturday. You may not recognize me. I have long naturally wavy, slightly curly hair, but it’s fine. It used to be thick until I went through menopause, sigh. The length is doing nothing for me. I wear it in a ponytail most of the time. So I’m getting it cut! Not sure exactly how short yet, I’m going to need advice from my stylist, but I think it’s going to be pretty short. I’m getting new glasses soon too, I’m just going to look so different. A new me.
Well, I’m up late because I’m fighting a gastritis attack, again. I finally ate some real food today for the first day in a week, and now I’m so nauseous I can’t sleep. I’m off to take a Phenergan and try to rest.
I haven’t meant to stay away for so long, it’s just happened. I’ve simply been feeling a bit reclusive, withdrawn, just wanting to keep myself to myself. I haven’t felt there was anything wrong, maybe I just needed a recharge. Maybe it’s because my husband has been sick twice in the last month. First he had a bad cold that set him back a week then less than 2 weeks later he came down with an awful bug that put him in bed for another week, (in between that I had a cold). It’s hard when the sick need to take care of the sick, but I think I did a pretty good job of it. I even went to three doctor appointments all by myself.
I actually felt like I was accomplishing quite a bit, but something has been off. I didn’t want to talk to people. I didn’t even realize how much time went by where I didn’t talk with people, that was a weird thing. People I normally talk with nearly every day, suddenly I hadn’t talked with in a week or more. Yeah, I’m still not really sure what has been up with that. I missed them, but I felt like I had absolutely nothing to say and felt awkward trying. I’m feeling awkward even trying to make sense of it. I simply felt I needed to be alone.
Now, I don’t know what has been going with anyone, my friends I normally talk to regularly or my blogging family. How could I have just backed away from everyone as if I don’t care. I do, I care a lot. I can only think of one thing that happened that may have sparked this, I made a comment on someones blog that hurt them. I never meant to. I thought it was encouraging, but it was not taken that way, and that broke my heart. I would never do anything to hurt another person, especially one of my blogging friends and family. However, I never meant to stay away, it just happened. I want to come back, but I’m not sure how.
I do have some news to share. Some good news about a new neurologist and some not so good news about us having to move before we planned. All things I want to share soon.
So, do I feel more connected to the world now? Not really.