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). 
 

Hi Debbie,

Thanks for sharing. Glad to hear your recovery is stabilizing in some areas and that you are navigating a “new normal” going forward. Yes, at four years post SAH I still identify with feeling overwhelmed at times especially in close quarters group events with lots of stimulation (grandkids birthday parties) and holiday gatherings (at times I feel like crying). In general my anxiety has increased.

If you can keep a log of your blood pressure throughout your day (may be hard to do during conversations ~ “excuse me, I feel my blood boiling and need to check my blood pressure” )~ but, it would be good to have a record of the time of day and situation with BP reading to share with your primary care physician.  

I did not have high BP before my SAH (in fact it was always low). However, I started to have symptoms like you mention and kept a diary that indicated my blood pressure was consistently high and spiking and consequently I was prescribed BP medication. It has been very stable now.

I agree that stress and lack of sleep contributes to more anxiousness on my part. I also like the word “reset” and have learned to take better care of myself by stepping aside or excusing myself if I feel that blushing, or icky feeling or irritability coming on. Sometimes just practicing calming coping skills is enough.

Other times a quiet retreat to be alone is needed (I know, not always possible on the job). It is a huge adjustment ~ nothing is really quite like it once was ~ but, we are all miracles in having survived and have to learn to press onward. You are not alone in what you are experiencing and it takes time to find a good routine and self care. 

Big hugs, Kathleen (Colorado) 

Today’s the day! Four years ago ~ in the evening about the same time I am now writing this note (USA Mountain Time).

I’ve stayed inside most of the day after attending church this morning. We are having a Spring snow storm in Colorado. 
 

I want to thank everyone who writes in and thank those who respond ~ BTG has been my main support and information hub over these years. I am so thankful for each of you . . . and to a few others who care from above. 
 

Thanks for always being there no matter what ~ and keeping the light on when we need to find our way. 
 

I am trying to be more positive as I face new challenges ~ for Win’s sake I sing. But, I’ve also learned to be a bit more blunt when other people just don’t get it. I can usually stop an uninvited lecture or motivational charge with the words, “ You do know that I have brain damage.”  
 

Each of you are my hero ~ and I wish you the best as we continue our post SAH journeys and bump into each other now and then and lift each other up. 
 

Love, Kathy (Colorado, USA)

P.S. Please post in the correct thread 

Thank you Super for all the encouragement over the years. Happy belated anniversary. Best regards.  
Kathy ❤️ (in Colorado)

Thankful anniversary Debbie! WOW. I loved reading the encouraging posts to celebrate. I am heading toward year four and never thought of turning that day into a reason to celebrate. I like that idea. My daughter was an ER nurse and was there in ER when I arrived. She was somewhat traumatized by it all ~ more hands on than most.

I remember her cutting off my shirt that I had just bought. I already had IV lines and stuff from paramedics. We laugh about it now. She is now a nursing professor and has me come in each term to tell my story and inform students what was helpful and not so helpful with nursing care. I think most family members just want to move on from the event (6 weeks in hospital).

My sisters are the only ones who mention it and ask about ongoing problems (memory, confusion and fatigue). My mother passed into glory while I was in the hospital so that does make it more sad; however, there is a miracle with that story ~ mom had collapsed and was in a coma four days ~ came out of it and talked to me on the phone ~ told me to keep fighting, then she went to my sister’s home on hospice for four days).

I am so grateful for hospital staff, family and friends who were there for me. It is definitely a second “birthday” of sorts. Best to you, Debbie.

Kathleen (Colorado)

I loved reading your five-year anniversary post. Congratulations! Thanks for keeping in touch and encouraging us to accept the new normal and look for opportunities for growth and change. Not always easy at our age (I’m 64). Best wishes in your new adventures. Love, Kathy (Colorado, USA) 

Thanks for sharing Jess and we feel your heartfelt gratitude. Congrats to your eldest son and blessings to both boys. Reading such posts truly does give me strength for the day and bright hope for tomorrow. 💗Kathy (Colorado, USA)

Dear Claudette, I am so sorry for this news. I am sorry it is you who has to bear yet another hardship during this difficult season of loss and family health crises. It is understandable that you are feeling depressed. And, we are always trying to protect our children.

You did the right thing reaching out to BTG. It helps to put your thoughts and emotions down into words. We are here. We share your struggle and tears. How do any of us do it? It helps knowing others understand and care. I want you to know I care. Others here also will lift you up in their thoughts and prayers. For me, my faith carries me through times of uncertainty and keeps me from despair. It is an inner strength and resilience that comes just when we need it that keeps us pressing on and looking to the next day in a spirit of hope and determination.

Keep the fight in you dear friend. I am hoping you’ll confide in someone there and begin to place yourself in a circle of supportive people that can offer you their presence and hugs. Seek professional counseling if you must ~ no shame in needing help to process all you have gone through these past few years. It is important to get the support you need and establish an environment of calm around you. Your mind and body need healing. Your feelings are normal.

You feel sad because this is awful. You feel tired because this is exhausting. It is okay to be angry. Don’t shut down from people who might mean something to you or can actually help you. Today, I pray you are able to discover… to notice… to taste… to smell… the small joys and simple pleasures that make a life worth living. You are a blessing. You will journey through this next medical trial and we will walk it with you. Our suffering is part of our humanity ~ sometimes it just hurts.  It is good to sit and walk together. Love, Kathleen (Colorado, USA).  

Hi Dawny. I certainly understand your comment “feeling nervous but also relieved” ~ and, have you in my thoughts and prayers. I try to keep myself busy on a house project or gardening so I do not perseverate about a procedure when they come up. Also, keep well hydrated. Sending hugs. ~ Kathy (Colorado) 

Oh, thank you for sharing this update. So thankful you have found a doctor who listens and is willing to provide answers for you. Yes, prayers answered. I do hope this gives you the courage to press on when you face doubts and trials.

And, like so many of us had to learn don’t be afraid to reach out for support. The BTG has been my lifeboat during seasons of unanswered questions and times of discouragement. Now, that you have received comfort and calm in your affliction, you will be able to offer compassion and calmness to others who are in any affliction with that same grace and understanding.

I have learned that when someone has had a brain injury there will be effects of increased irritability and depression at times. There is much wisdom in calling hotlines or support persons at such times. I definitely had increased anxiety in general after my SAH and did need a prescription through the worst of it. Now, I am doing much better. 
Take care of yourself. 
Kathy (Colorado)

Dear friend, I am so sorry for your suffering.

We cannot give medical advice. I am in the States so I do not know the emergency procedures and treatments for your location. We are told in my country to keep pursuing an answer. Maybe that would mean traveling to another clinic? However, that may not be an option.

That you are alive if it was a brain bleed is a miracle itself. It takes time for your brain to heal. You can read posts on this site about what helped others after an initial “worse headache ever” experience. I can tell you what helped me. Drink lots and lots of water. My headaches were better with my head elevated when in a reclining position. Sleep as much as you can.

I had a massive brain bleed so they are able to see the area on MRI even three years out. I also had hydrocephalus. I did have a spinal tap early on that confirmed SAH. It does get better. I would say 6 weeks post bleed I felt stabilized. Then, it was gradual improvements as the days went forward. It took about a year before headaches subsided significantly. I remember celebrating when I could sleep flat again!

Today, stress and change in weather (barometric pressure) can bring on headaches. I have difficulty with memory and fatigue and I do have more mood swings (irritability) since the SAH stroke. My Christian faith keeps me pressing onward and choosing to live with gratitude and determination.

I have also learned from dear ones on this site that singing helps (it is amazing how lifting your spirit in song heals your mind and soul) and humor (we find a new normal that has its quirks but also immeasurable joy) and acts of kindness (reaching out to others puts everything in perspective).

I have read that sometimes the exact location of bleed is not found and my 3 angiograms did not help locate aneurysm. The neuro-surgeon said they believe an aneurysm imploded on itself and closed off. Please know we care. Where there is life there is hope.

I am on blood pressure medications now. I too had very low blood pressure until the SAH. Now, it must be regulated with medications. Again, this is a community that understands and is here so you can ask questions and vent. Don’t give up dear friend. Your life matters. Sending my prayers and a big hug. 
 

By the way, some of what you say sounds like Covid variant symptoms. Have you been tested, vaccinated? 
 

I am just reading about dear Macca. My deepest condolences to his wife and family. His words were always so kind and encouraging. His words certainly brought strength to me on my SAH journey. Hugs to all the lives he touched. Kathy (Colorado)