Welcome to our blog! I originally started this blog in November 2010 just prior to having a major brain surgery to remove a large bleeding cavernous angioma from a deep part of my brain. You can best understand the gravity of our experience by reading the first several entries.(Nov 2010-Dec 2010) I wrote the first one and my sweet, adoring husband, John, wrote the next several (while I was too sick to do much of anything) that documented surgery, immediate recovery, and our reaction to the surgery complication (stroke)that was revealed 2 days after surgery. This recovery process has been difficult but we are making it. We appreciate all the kind words of encouragement we have received and we would like to thank everyone that has participated in helping us along this difficult journey. Also, if you have any questions about my personal experience, please leave them as a comment or contact me directly at thankfulforeveryday@yahoo.com and I will respond although I am not a doctor and this is not a replacement for medical care or advise. Please ask a real professional, or probably several. :) I hope to be able to help at least one person along the challenging road of brain surgery and recovery.

Sunday, February 26, 2012

Still working on recovery

It has now been about a year and two months since I had surgery and my resulting stroke. I am always completely thankful and grateful for the recovery I have had/made, how far I have progressed, and for "what is" today! While I always am thankful and grateful, I remain hopeful that I will continue to move forward. The past two months have not exactly been encouraging as I have seemingly taken several steps back rather than forward. At this point, the dreaded plateau sounds almost welcoming. I finally feel as if I am beginning to almost hold steady again. I am anxiously awaiting the next steps in moving forward again...hopefully!! In November and early December, I was doing the best I've done yet. And then I was hit hard by a new set of issues. The whole UTI/kidney infection really zapped me and continues to deliver pain daily. It became abundantly clear that I am different now. I do best when I can just go through our predictable daily routine, without any extra taxing events. I am not prepared to deal with any additional health problems, so I hope I can just stay healthy forever! Our daily life, without any extras, currently consumes ALL of my limited energy.
As we move into the next phase of recovery, the chronic phase(after one year), I have started looking at some new options. I had been hoping/praying that my fatigue would just disappear...but it hasn't. I have tried several techniques to "manage" my fatigue with little to no success. Fatigue is my worst deficit at this point, and I am hoping to beat it. Currently, my fatigue is severe and very  limiting. I  had neuro-psych testing done back in November and they provided me with a number of recommendations. One of their suggestions was to at least try some meds. for fatigue. The biggest issue with that lies in my risk for seizures, so they said medications could be a difficult balancing act. I was encouraged by the hope of eliminating this fatigue, so I began my search for a new neurologist AGAIN. Lucky #7 or 8!!! So I have 2 new neuros to try next month, I hope one of them works out and I can get back to working on my recovery with the help and support of an expert. I also had a sleep study in November which looked pretty problematic to me...but I'm not the expert. ;) The neuro-psychs also said they thought that could be a big part of my fatigue, but I needed a "good" neuro to work with me since my current neuro didn't offer any insight to address my concerns.
This coming month is jam packed with several specialist appointments and I look forward to finding answers, initiating solutions, and finally feeling better!!   

16 comments:

  1. Fatigue has to be one of my depressing affects of the stroke and no one in the world seems to know anything about it.

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    1. Thanks Dean. I do always try to stay positive and not get depressed about what's wrong, although this fatigue really is a huge problem. I know how lucky I am...even if this was the end of my recovery....which I will never agree to unless I am fully satisfied... Not even close yet!! I always hold onto the hope that I will recover eventually, and am forever grateful for where I'm at today....I could be much worse off...or dead. I'll take this over the alternative anyday. I am looking forward to my appointment with a UCLA stroke expert in a few weeks...always hoping I can find someone that knows something.

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  2. My biggest problems are aphasia and fatigue/insomnia. It's getting better, but so slowly. Having a toddler doesn't help with the fatigue, I'm sure! In general, groups (aphasia, stroke, adaptive yoga, etc) have been more helpful than specialists. Doctor appointments exhaust me.

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    1. Thanks Grace. It just seems wrong to have fatigue and insominia. I recently started having insomnia too...its definatly making things worse. I can't imagine the horror of aphasia. Had I lost my voice...I don't know where I'd be. That seems like one of the worst possible deficits. Agreed, doctors appts. are draining, but with my "new" kidney uti issues...I need medical answers. I've tried to wait it out for 3months now....and I'm not getting better. I'm also interested in an expert evaluation/treatment plan for my fatigue/sleeping issues. We'll see.

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  3. I'm 8 years post-stroke and the fatigue gets better so don't lose hope. Having had several setbacks myself I know how discouraging they are. I'm so glad we have a small community of people who can relate to what each of us is going through.

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    1. Yes, thanks for sharing your struggles and successes too. It's helpful to know that I'm not delusional in hoping/thinking I will get better.

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  4. I too vote for fatigue as the long lasting big problem. Pretty sure your little guy will continue to be part of the the love but not the solution. I am sure that I am gradually building up more endurance at almost 4 years.

    Medications are so tricky to balance at the best of times. I had a bit of a collapse last week and it looks like it was because I took my BP medication in the morning (fell asleep on the couch before taking it the night before) too close to exercising in the warm pool.

    One of my stroke group ladies always uses a phrase that I want to share. "Keep on keeping on!"

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    1. As always, thanks for the encouragement and message of hope!!!

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  5. You probably already know this, but cranberry juice is good for utis. Research has shown that cranberry juice makes the wall of the bladder slippery so bacteria cannot stick to the wall and grow.

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    1. Thanks Rebecca!! I sure wish it would have worked for me. In the past 3 months I drank so much, I actually got low sodium. Since then, I've decided to stay way from home remedies. That's why I'm finally seeing a urologist tomorrow. Been waiting more than a month to get in. When they said I had to wait this long to be seen, I thought/hoped I'd be "cured" by the time the appointment arrived. No such luck! :( I hope he has answers!!

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  6. You are the strongest person I know! Keeping you in my thoughts and prayers daily!

    -Christopher

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    1. Oh thanks Christopher!!! Not quite sure about being the strongest...just trying hard to be my best everyday...some days are better than others. ;)

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  7. Elizabeth - it's refreshing to have your positivity around in the angioma community. Having hope is what motivates life, and you have no shortage of any of it :) I hope this past month has treated you well (I suppose I should check the forums!) :P Update soon!

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    1. Kinda funny to read this post today, as I'm feeling mildly defeated after a terrible md appointment today that I held out hope might be part of the solution. These neuros are just bumbling around, hoping nobody figures out how dumb they are. Urgg! The idiot today basically told me all the problems I had/have are in my head. I always sort of agree, yes I had a bleeding angioma, and now I am a stroke survivor(all problems "in my head")...clown! Anyway, seems it's back to independent study/rehab. I need to post an update of the past month, its been eventful in a not so great way. :)

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    2. Oh and of course, the solution for all problems "in the head" is Prozac. Never mind that I'm not depressed. ;)

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  8. Elizabeth I came across your blog while searching the internet for information on cavernous angioma's. I was diagnosed about 3 month ago because I started having symptoms. About a month after my first bleed I had another bleed. The angioma is in my thalamus. I have been told by two different Dr's to wait and see and one who is recommending surgery. To be honest with you both options scare the heck out of me. I have improved from my bleeds but only about 80%. I don't know how I am going to make this decision. The Dr who is recommending surgery feels very confident that he can safely get in and remove it. He makes it sound so simple that it scares me. What was your experience?

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