Kathy

Hello my dear BTG friends. I hope you are starting to see signs of Spring. I am a little late in posting my 5th year anniversary which was on March 6th. I am so thankful for this group. Everyone's posts and comments have been a great source of inspiration, information and support for me over these years. The month of March in particular has left me feeling more discombobulated. We recently returned from travels overseas and it has certainly been more difficult recovering from jet lag. We traveled from Colorado to Italy joining my husband on his business trip and also during William's Spring Break. We had a lovely time in Florence and Pisa except when delayed because of airline strikes in Munich with our connecting departure flight from Florence to Munich. Our flights home were canceled twice and our departure delayed for three days. William (13) didn't mind missing school. I don't do well with unpredictability and change so struggled on those days so much so that my eyes brimmed with tears. Also, I had forgotten to take extra medication with me and had to purchase some at a local pharmacy. I had taken pictures of my prescriptions so that helped. It was very easy to get what I needed and not too expensive compared to the pharmaceutical costs in the USA. I would say that this past year has been more difficult. Maybe getting older (66 the last day of March) makes my fatigue, memory problems and generalized anxiety and confusion even more pronounced. Healing is never as neat and tidy as we would like it to be. It's not linear. It is a journey of both progress and regress. We each know this all to well. Together, we are making it. I have a heart full of gratitude and grace for each of you. Love, Kathy (Colorado, USA)

Hello June, I just read your 1st anniversary post. You’ve had some great responses ~ that’s why BTG is such a life-line post brain bleed crisis. I certainly can say the first year of recovery is the most difficult ~ a brain injury heals very s l o w l y. Lots of rest and a slower pace all necessary. Keeping well hydrated is also so helpful. The hardest for me was the onset of “panic attacks” and ongoing anxiety. I will be 5 years post SAH in March (and will turn 66 years old) and still struggle with that one! I take anti-anxiety medication at the lowest dose. I also tend to become more easily irritable and that makes me sad. I have had to learn to give myself more grace and lean on the support of my three sisters when things are gloomy at home with my husband and our adopted son (13) and foster niece (20) both with special needs. I am a grandmother of 5 boys and one girl and they all give me lots of joy! Grandma dates with each of them are the best. I am thankful our four grown children and their spouses live close. My youngest daughter (37) married with three boys helps me a lot. She is a Master degree nurse finishing her Nurse Practitioner degree and teaches nursing. She has me come in to her class once a semester to share my SAH story and 6 week hospitalization and what was most helpful and needed from my nurses. I wish you the best in your recovery ~ it is up and down at times but you will see progress as Tina said. There will be residual challenges and the acceptance of a “new normal” but life is a gift and there are rewards to perseverance. Give yourself more grace on hard days. Know you are not alone 💗 Taking one day at a time, Kathy (Colorado, USA)

Hello Pat, You may read this next year 😊 I too don’t always check in as frequently but love to read the posts especially if I am having a difficult day. Congratulations on your 6th SAH anniversary and I loved your words to BTG ~ as I can certainly echo them. Good to hear you are able to work from home part-time. I too still struggle with fatigue and short-term memory problems (well, some long term also ~ just gone). Sorta makes me feel a bit like a Swiss-Cheese memory ~ holes here and there. Nice of you to drop in and provide an update. So glad you are feeling blessed. Best regards, Kathy (Colorado, USA)

Dear Super Mario, I am late with a response but wanted to chime in my congrats on your 19th anniversary and condolences on the loss of your dear husband last June. I am sure it has been a difficult adjustment. You have been such a constant encourager to all of us who browse this sight for a word or two to help us keep on keeping on post SAH. May you find new joys and strength going onward and know you are a blessing. Love, Kathleen (Colorado, USA)

Hello Dee, Welcome. It is great you have found this support forum. You are very early in your recovery and everyone’s experience is unique; however, some post SAH stroke challenges are fairly universal and fatigue is one of them. Getting good sleep and drinking lots of water is a basic essential while your brain heals. Try to pace yourself with breaks so you don’t over extend yourself. I found reading some of the main articles posted on this site and following topics that matched my concerns offered immediate help and encouragement. Always seek medical consultation if you have questions that need immediate professional input or if you have new symptoms. Stress can bring on more fatigue in my experience. I wish you the best and am thankful that you are doing so well overall. Kathleen (in Colorado 41/2 years post SAH)

Hello dear Faith, Thankful your husband is home. Yes, dizzy and sensitive head as far as easily over stimulated by sounds, lights and movements around me were common those first few months after leaving the hospital. I had to learn how to turn while walking without getting so dizzy. Rest and drinking lots of water daily and not pushing to do too much are important for recovery. Later PT, OT, and speech (more for mental deficits) rehabilitation helped me with movement, balance, thought process and relearning some math and comprehension skills. I had to sleep with a large triangle elevation pillow for over a year. I would have headaches if I slept with my head more flat on a regular pillow. It is sort of a learn as you go recovery. I found reading posts on BTG helped me so much to learn what to expect and provided encouragement and perspective from others who understand. Take time for yourself as a caregiver and let others help. Meals provided from our local community of friends, family and place of worship were very helpful to our family. Keep us posted. Blessings, Kathy (in Colorado)

Happy Anniversary Claudette 💗 And, thanks for posting. It is good to hear from friends on this journey even if only once a year. Wishing you well and happy gardening. I recently purchased a lovely flowing fountain that is placed next to my backyard deck. It has a relaxing sound. Yes, it is little pleasures I seek nowadays. Best, Kathy (in Colorado)

Hello Pat, First of all congratulations on almost nine years post SAH. It is a new normal for most of us and there are times of new symptoms. It is always good to check with your neurologist if you are having new problems. You may need an updated MRI and include scans of the left bottom side of your head. You may read in posts that changes in barometric pressure sometimes triggers headaches. This is true for me. I had hydrocephalus following my SAH and it seemed that the only way I could sleep well was using a large triangle elevation pillow that would prop my upper body up. I could not lay flat even with a pillow without suffering headaches and similar pain on the bottom left side of my head. I am four years from SAH. I had to sleep this way for the first couple years. I am normally a stomach and side sleeper so it was difficult to adjust to this position to sleep, but I eventually did. I found placing a pillow under my knees helped keep me from sliding down during the night. I don’t want to alarm you. But, post SAH scans revealed I have blood clots (not related to my bleed). They are stable and continue to be so with follow-up scans. I was only on a blood thinner Eliquis for 3 months and it was advised not to be on it long term do to my recent SAH history. The clots are located on the left lower side of my head ~ left transverse and sigmoid sinus thrombosis. I have sharp pain in my left internal jugular vein when I yawn big or with some sudden head movements. I have to think “relax” and not move and it goes away. I was told it was because the passage is more narrow. I am on blood pressure medication. in general, besides ongoing fatigue and short term memory problems I live a full life. We have four adult children (lovely spouses) and six grandchildren. We adopted (now 12) and foster another (niece 19) special needs children now. I did have to retire early from teaching which I miss ~ but, I was close to retirement age. My dear husband is still working. My faith and family keep me going. Best wishes to you. I hope you are able to have relief from your aching sensation during sleep and find the answers to its cause. I have learned that sleep deprivation causes all sorts of physical and emotional problems. That is one of my priorities now ~ getting enough rest. This requires short naps most days. Take care. Kathy (in Colorado)

Hi Paula, Thanks for posting. Happy for your 10th anniversary celebration. Hope you enjoy many more hours remembering life events with your dear husband and making new memories. Best wishes, Kathleen (in Colorado)

Hi Swishy Jean, Congratulations on your 5th anniversary! I’ve appreciated your posts and support. Celebrating your good family happenings (weddings and grandchildren) and time with husband and your positive attitude (understanding it includes ups and downs). Hugs, Kathleen (in Colorado)

Sarah, Hoping things are improving and medication management helping. 💗 Take care. Kathleen (in Colorado)

Hi Chelle, Thank you for the post. Congrats on your number 8 anniversary. My condolences on the loss of your dad. It is hard to rebound from those times we are overloaded with sadness and difficulty. I am glad you were able to garden and got some help. I also find gardening therapeutic. I know you will have lovely times in your garden. Happy to hear you are learning to drive again. Take it one day at a time dear one. Best, Kathleen (in Colorado)

Dear Daffodil, I am catching up on readings. Thank you for your beautiful summary of the past ten years and congratulations. Your attached blog writing was honest and an inspiration. I think our SAH journey is one of acceptance of a “new me” and you express it so well. I am thankful you remind us not to rush recovery. I am one who has benefited over the years from your experience and words of encouragement. (I too loved subs poem). I like that you recognize that your suffering and trauma and personality changes impacted your loved ones and really everyone together weathers recovery. Your determination and finding a supportive circle around the “new you” really spoke to me. I trust you’ll spread your wings and take off on new paths of understanding and joy as you embrace the future. I wish you the best. Hugs, Kathleen (in Colorado).

Thank you for the encouraging update, M-C. Love your perspective. Best regards, Kathleen

Hi M-C, I just read your post. It was written so well. I don’t know how I missed it but I tend to come and go on this site as needed ~ it has always been a source of information and support. I was wondering how you are doing? My SAH was the same year as yours. It is an ongoing adjustment but attitude does make a difference. I am still learning how to master my irritability and anxiousness. It is a surrender and letting yourself be dependent on the help of others and the good Lord. Best wishes to you, Kathleen (Colorado)