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Everything posted by Kathy

  1. 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).
  2. 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)
  3. 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)
  4. 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?
  5. Welcome. I am from the States, so emergency medical serivce may be different ~ but, with covid there are changes. I am so sorry you were alone through the onset of your medical emergency ~ it always helps to have someone there to advocate for a person and be a source of support. Glad you have been released and now in recovery. Don't be too hard on yourself. It is most important to let your brain "rest" and drink lots of water. Follow dischange instructions. It takes awhile to return to a regular routine, and for some of us we cannot return at the pace we had once lived. I hope you find encouragement and helpful suggestions at BTG as I did (3 years post SAH). Best wishes, Kathy (Colorado)
  6. Okay, this is a late post to my third year post SAH anniversary. Hurray. It was actually on March 6 and now it is (let me look at a calendar) March 17th (a pinch to all not wearing green). Our youngest two adopted children (we also have four adult children) are on Spring Break from school ~ not so spring weather-wise. We had a BIG snow blizzard a couple days ago. Lots and lots of shoveling. My eleven year old was upset that we didn't get to travel again (usually we travel over school breaks) and so my husband took him to a nearby hotel with a heated pool to celebrate. That worked. We were all going to go but then our other special needs adult neice (18) wasn't feeling well. So, we two stayed home. On the exact day of my SAH anniversary, my husband, youngest daughter (a nurse) and I went to get our covid vaccination (Johnson&Johnson, one shot). It was held at a fairgrounds about a 30 minute drive. Not a long wait in line as some places. I had a sore arm for several days and was very tired, but no other side effects. We have a phase eligibility program in Colorado. I am glad we qualified and were able to find an appointment. I am pressing onward in my SAH recovery ~ and, still struggle. The posts I've read on BTG have been so helpful and encouraging. Thanks everyone and keep posting. We have a new grandbaby ~ a little boy named Lucas. He was born October 30, 2020. Our sixth grandchild! I celebrate my 64th birthday the last day of this month. Two of my husband's sisters are flying in this Friday to visit. So, some travel is returning. My husband slipped on ice in early January and tore apart his shoulder rotator cuff tendon ~ OUCH. He had surgery on February 12. He has started physical therapy. We have been told that it is a long recovery (8-12 months to get full use of the arm). He is in a sling. He has been such a support to me and now we feel like we both have limitations! I've had to do more and do all of the driving (not easy post SAH). It has been an added challenge but also some lessons learned (maybe I was depending too much on my dear husband). I don't like that I forget not only moment by moment little things but have also forgotten chuncks of time and events. It makes me sad. However, I still find humor and joy admidst it all. Thanks to BTG and best regards to each of you. Kathy (Colorado)
  7. Hello Daff ~ happy 9th post SAH anniversary. I read your blog. Now, I know why Daff (at least, the poem suggests). WOW. It is something when you don't check in regularly on BTG and then when you do ~ everything you "catch up" reading speaks right to you! A "divine appointment" sort of thing. I have struggled on and off since my SAH and at times don't like the "new me" in the "new normal" BUT your blog hit a chord. I am a type A personality and control freak. Not that I didn't already know it, but I didn't connect how much it is interfering with my post SAH progress. I am a person of faith ~ so, even beat up myself more that I am not "carefree". I am still angry that it happened. Your blog really helped. I am three years post SAH and you are nine years. There is hope because as you say, "it is still a work in progress". It doesn't always make sense or work out as one expected ~ and that's okay. I think we can get stuck in a cycle of emotion~ dare I even admit ~ bitterness. I love how you say you developed "a practice of care, self and otherwise" ~ and, I think it really does start with self-care. I like in your blog how you said everyone (post covid) now knows a bit more about knowing that there is no 'going back to normal' and then you added, "instead there is only the promise of what comes next and what we make of that". Simple words but so profound. I'd almost have to rewrite your whole blog! It meant that much to me. Pray that I too can let go more. I love daffodils in Spring. Thanks Daff. Love, Kathy (Colorado)
  8. Belated hugs on six years post SAH, Claire. Well, I am impressed that you are running again. That makes me want to get up and at least walk more. : ) In the States we have a saying about your first year of college ~ and, gaining 15 pounds. Well, my first year of COVID has been like that. I have gained several pounds.Okay, so I need to just get out and put on foot in front of the other ~ right? I hope you had a good run. I like how you say "it is different" ~ it is so true for me and I am still learning that it is good. Thanks for your encouragement. Kathy (Colorado)
  9. Belated congrats on your 17 years post SAH. Funny how I feel I know so many of you in such a short time and we have never met. Thanks for your posts and encouragement. Yes, I am looking forward to more opportunities opening up for travel. Although, our family has enjoyed more of just being outdoors around our home area. Well, not in the last few days as we had a record snow blizzard! Love to you, Kathy (Colorado)
  10. I had a headache in the back of my head for almost 3 years post SAH. The neurologist always dismissed it and said it was expected (something about agitation from the residual blood). Long story, but my oncologist recently suggest physical therapy (PT) for the pain. She wrote a prescription. I was doubtful but decided to give it a try. My pain felt like a tight stretched band across the back of my head. After PT sessions twice a week for about 8 weeks ~ I actually had relief. I was amazed! The exercises and neck and spine manipulations really did help. I am just throwing this out as I never would have considered PT for any kind of headache. I am so thankful and recommend this as a possible option in some cases. Kathy (Colorado)
  11. Sorry for the delay, but Yippee ~ it is over! I hope that during the rest of your day you were able to relax. I also was given the choice to listen to music or have ear plugs during several MRIs ~ the music never was loud enough. So, I always ask for ear plugs now and it does help. You did well. 👍 Kathy
  12. 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)
  13. Yes, I never thought I was claustrophobic until I had my first MRI (before my SAH). I freaked out. I pressed the button and yelled “Get me out now!” They did. I told the technician that it felt like I was being buried. He sorta smiled and told me to look through to see that it was open at the other end. I felt very embarrassed, but he assured me that it was a common feeling. He was very helpful. He asked me what was my biggest fear. I said ~ that I wouldn’t get enough oxygen. He said, okay we can help with that fear. Then, he brought oxygen tubing and positioned it right near on my chin resting on my chest. It was blowing air. He also asked if I would like a cloth over my eyes. And, I had ear plugs placed in my ears. He was very patient. I finally went back in and finished the MRI. Now, I just ask for all of those accommodations whenever an MRI is scheduled and I have not had any problems! I kind of have to hold the tubing when going through as it does tug a bit. I hope you find what works for you to make it more comfortable. ~ Kathy
  14. Hello Alec. Yes, recovery is a process and it takes time. I am glad to read the progress you have made even if not completely back to your old self. I don't know if we ever get that back completely. Part of recovery for me is accepting a "new normal" and continuing to grow and learn. Things are not as they used to be. I think I am more prone to mood swings and irritability. I still get tired easily and have to take naps. But, life is good. I appreciate family and friends who take time to connect with me and are patient with the challenges I continue to encounter.
  15. Thanks for posting. I am so sorry for your loss. Yes, a sad but beautiful love story. It looks like your children are a great support. Continue strong in your recovery. Best wishes. Kathy
  16. Congrats on the post SAH five year mark. Good to hear your honest summary. I also find my experience a balance of gratitude and learning to accept a new normal. I am more irritable lately, but I think isolation during safer at home restrictions may be contributing to my moodiness. Yes, I agree that SAH brought lessons on empathy and compassion. Best wishes in your new career. ❤️ Kathy
  17. Thank you for the cheers! I appreciate each of my BTG friends ~ and wouldn’t have made it through some of those most difficult days (and there still are “those” kind of days at times) without this network of support. Blessing to all of you. ~ Kathy (Colorado)
  18. March 6 is the day. It feels like a lifetime ago (so many changes) and yet, also only like it happened yesterday. I am just now starting to adjust to the "new normal" and taking more command over my emotions. My faith has kept me hopeful. I am thankful for my family, friends and BTG folks who have surrounded me with prayers, support and love ~ and patience. It's been a difficult recovery. I think more so because during this time I lost my mother while I was still in the hospital (April 2018), my father this past November 2019 and my aunt (mother's sister) just on February 15, 2020 ~ she was a second mom to us. But, a new little grand-daughter was born April 8, 2019. I am so glad to be here to celebrate her upcoming first birthday! We have four grown adult children and spouses and have four wonderful grandsons as well 10, 8 and twins 7. Now at 62, my husband and I are raising our adopted 2 special needs children 10 and 17. This keeps me insanely busy. The oldest joined our family just 6 months before my event! After my SAH, I retired early from part-time teaching. I miss being a teacher : ( I have appreciated EVERYONE of you who have written about your lives, joys and frustrations and EVERYONE who has responded ~ it encourages so many readers ~ like me! My heart is full of gratitude, Kathy [Thank you Karen and team for keeping this website going]
  19. My dear, I understand. I was in the hospital during my birthday with the initial SAH and then the following year with severe vertigo and vomiting. I was so worried and frustrated. Everything checked out okay. After a similar episode, they sent me to an ENT. They diagnosed it “vestibular migraines”. But, like you ~ I have been a bit low lately. Unfortunately, this can be an outcome of the SAH. It is good that you are getting counseling. And, it helps to vent and hear from others. I might guess you are an over-achiever like myself. You don’t feel validated or given affirmation without “doing” ~ and, now it is your place to be cared for and fatigue keeps you from accomplishing all that you used to do. Please know that you do matter to your family and you are valued ~ look how far you have come. This community is here any time to listen ~ some days you’ll need to check in frequently and some days just knowing there are others walking the path you are on is helpful. It takes time to adjust and find your new pace. My vision also has been on and off (double at time of SAH event ~ I also had hydrocephalus ~ but now resolved) but I notice if I have too much media / computer time or strain it does get quite blurry. Then, I just have to rest them and I use lubricating eye-drops. Win has taught me to sing a bit when feeling very low. I am not a good singer and so that helps even more! I send my love and prayers. Kathy ~ Colorado, USA
  20. Hello Sallios, Yes, I had really bad balance problems initially. I had to use a walker and then a cane as I improved. I had about 3 months specialized PT and that helped. Learned some tricks to help ~ like focus on one point while turning and then focus on another point to complete turn (don’t move head to follow turn). At 20 months post SAH I don’t use a cane, but have some odd days when my balance is a bit off. I usually have to slow down or hold on to my husband’s arm. Now, I also get some dizzy spells (nausea and vomiting) and headaches ~ different than being off balance. They told me probably vestibular migraines. I think stress and change in barometric pressure contribute.
  21. Thank you dear Win. I had another painful episode last night (back lower left head and jugular) and dizzy, but it subsided in about 30 minutes. I had to sit down. I worry the doctors are missing something ~ clots moving or increased blood pressure on a thin wall or small TIA (have no idea) ~ probably worthless to speculate. We are having another cold front move in. Concerning~ but we can’t live in fear. Thank you for good wishes for my dad. He is holding steady though weak. Thank you for your kindness.
  22. Welcome to the site Jo-Anne. I find it very helpful to read the posts. I think the older we are at our SAH event ~ the more problems show up (that’s just my opinion). Maybe it just takes these older body / brain parts longer to mend. I am glad you wrote in and I know you will find a supportive and understanding group of fine people to interact with and who will encourage you. Yes, the headaches are a bummer. Drink plenty of water and take naps. Blessings. Kathy
  23. Hello, I just wanted to thank you for responding to my post and to give an update (somewhat delayed). I ended up going to the ER (at the insistence of my younger daughter ~ a nurse). We had already met our deductible so that helped. They did MRI and MRV and found no changes. So, they sent me to ENT and that doctor gave me medication for dizzy spells and told me most likely vestibular migraines. My primary care physician also adjusted my blood pressure medication (had been lowered, now back up 1/2 tablet). I am feeling better. I am reminded that I need to rest more. My father has been in the hospital for 2 weeks (twisted bowel) ~ had surgery but aspirated fecal matter and on ventilator and IV antibiotics. Two of my sisters are with him (Texas) and we as a family had previously made plans to visit mid December (so no plans to go right now). The doctors give him 50/50 chance of survival, but he is making small improvements daily. He is conscious and able to squeeze my sister's hand in response to her. Thanks again for the support.
  24. Hello Sunflower 25 I am so sorry for the on-going worry ~ especially with 2 small children. I am 20 months post SAH and older (62) but have 2 special needs children we are raising ~ after raising 4 children to adulthood and now have 5 grandchildren. The most important for me (and I would guess for you also) is to get in that afternoon nap. If you can make arrangements for someone to watch the kids every day while you nap (2 hours time), that would be great. It would also be a daily "check-in" to give you some peace of mind. DON'T do housework or laundry during this time (I would be tempted to) but just rest / sleep if you can. I had to rest / sleep with my head elevated for several months (used wedge pillow) to help alleviate headaches. Yes, and as others mentioned, stay hydrated. If you do have questions, call your follow-up neurologist (or staff nurse). My vision improved with time and the headaches were manageable. I have problems with short term memory, fatigue and difficulty processing information as the top three. It takes time to adjust to the "new normal" but it will come. Meanwhile, seek assistance at this time and don't be embarrassed to ask for help. You may want to reach out to some volunteer / church organizations to see what assistance they can offer. We were able to get meals from the local school moms and our church. Check if there is a Mothers of Preschoolers (MOPS) program near you if you live in the USA. Self-care and positive mental health are key to getting through this season of your life. Remember, others may not understand (you look good), but don't let that deter you from getting some help during your recovery. Keeping you close in my thoughts and prayers. Kathy
  25. It has been a few months since your post, but I just came back to Behind the Gray today (almost 20 months post SAH) and appreciate your open rant. It helped me to see your transparency and to read the encouraging replies. I hope you are feeling better and thanks for being here. It does matter. Hugs, Kathy
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