Slight set back

Hello everyone it has been awhile since I last wrote a post. I believe the last time I wrote notes on the forum were related to the ginger juice that I found that helps kill the tummy bacteria when taken daily which truly has helped with symptoms dramatically along with the daily warfarin, healthy clean diet, exercise, quality rest, consistent proper hydration and plaquinil for the joints.

Since I last wrote my husband and I were able to buy a beautiful quiet homestead near the river in Oregon. Excited to move we spent two weeks of preparation in order to move effectively. The daily lifting and work from the move was quite difficult yet I thoroughly enjoyed it knowing that my body needs to move in order to keep going in a healthy manner. All that said, I did not feel stressed simply exhausted physically.

When we pulled up to our new home the hard reality of the previous owner not leaving the property smacked us right in the heart. There we were with all of our belongs in buses at 5:00 pm in without anyway to remove her except by police force or a sheer miracle. The housing market in Oregon is fierce and to see someone take advantage like this has been a slight topic due to the shortage in our area for homes. Our precious home was invaded with a heavy stream of serious stress all at once. Our rental was already rented out therefore we were stumped at our home driveway. I felt a surge of stress and emotions. My body began shaking slightly only to increase severely when the realtors ran to us in the driveway explaining it was a negative situation that they were working to fix.

I normally am quite the peacemaker and have a natural ability to deflate negative situations with my years of owning a non profit that works with at risk youth and people with barriers. I simply had not ability to calm myself or to navigate logically. I started to loose thought, I began stuttering terribly and my body shook and shook. My head was pounding I felt faint and had to be moved to a place to sit quickly. The ER would have been the right call I'm afraid to say I chose not to go. Believing if I left I may not get our home secured.

The person that refused to leave felt so awful that it truly changed her heart and she and I embraced and I spoke kindly to her yet firmly that she had to go. The neighbors and my husband with the realtors of hers and of ours got her out a few minutes before midnight that night. She was held up in the garage so the house itself was clean and available. They set up my bed and laid me down while everyone rushed her while the heart was softened.

All this to say, I'm now headed back to the specialists and going in for a scan. Strong possibility that I had a TIA? Not really sure as I chose to stay there and I worked through it for two straight weeks of slow motion, slow thinking, stuttering, cognitive disruption and a body that would not work properly.

I am feeling better and gaining strength and am taking excellent care of myself but I am not myself. Can't seem to make the memory work like it should and feeling quite off, exhausted and stiff. The way my body shook was nothing I had experienced before. I shook and shook and shook. My nerves were running a marathon.

Any input or shares of others experiencing this would be helpful as I feel a bit alone again. I was doing so tremendously well. Could the nerves react this violently?

Thank you kindly

Becca

21 Replies

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  • Please take care of yourself now first and foremost, the house will mean nothing to anyone if you aren't there to enjoy it. May god help you to find peace in this turbulencešŸ™šŸ»

  • Thank you for your kindness and support

  • You are welcome

  • Sis: I am so sorry for your experience. It sounds like you handled it as well as could be expected. I'm praying for calmer days by the river for you. (Hood River?)

  • Good to hear from you DannyBoy :) So good to hear from you. Santiam River-Stayton. Its so peaceful here feeling like we hit a small part of heaven. Quaint house about two minutes from the river, many trees and room for our mission buses in the RV pad. Deeply thankful. There is only birds and the sound of the breeze here its deeply deeply peaceful. Seeing that the rest is in order now after the wrestle with the nerves. I'm wondering if my nervous system attacked itself or something of this nature / TIA? The lingering effects have taken a toll yet I'm bouncing back slowly. Hard cognitively though, headache every day for two weeks and they have softened now. Requiring a bit more sleep than I care to admit but I'm listening to my body.

    How are you doing? Message me. Big hugs and blessings to you

    Becca

  • I think u shud go to see ur doctor! It's important if u still don't feel well! You must rest up and find out what happened! I hope u feel better soon, but please get it checked! Keep us posted! GODSPEED

  • Thank you so much and yes I have an appointment next week.

  • When our bodies and systems live on the edge of a cliff, which does not take too much to push us over, then yes this is not a surprising reaction. You MUST see your Doctor if you have one planned in your new home town.

    As a footnote, I have spent the last few days in Pet specialty hospitals with at least one of my little dogs. On Tuesday we picked her up after her procedure and took her back to the hotel we were staying in as it was a 3 hour trip from our home. It was hot and she was still groggy so I took off her leash and opened the patio doors of our room. It faced a cut field and beyond woods. She was sleeping but then I noticed her move and saw her reflection in the glass door. Thinking she had just moved onto the patio I got up to get her back in, only to see her shooting across the field after a cat that had appeared. The side of the field had a wire mesh to stop wild animals coming in, but the cat found a hole and darted through. My dog followed and disappeared despite my frantic calling her back.

    For half an hour I searched the woods, running up and down calling her franticly with no sign. My husband was with our other dog who can hardly walk, doing what he could too. Then in the distance I could hear a whine and whimpering so rushed towards it. She had made her way back but could not find the hole where she came through the fence so was stuck. My husband got to her first and got her out of the bushes. I then realised that my heart was beating so fast I honestly thought I was going to have a heart attack. I too was shaking from the effort and the worry as I honestly thought Id never see her again. We were in the middle of the country, so if she had lost direction I don't like to think what would have happened. Shock and worry can make you feel like that and today I have a massive migraine to pay for it!

    Tomorrow, the other dog goes in for his procedure! More stress!!

  • Thanks so much for your share, I appreciate the encouragement. So happy you found your little doggie. I know ours are like our kids to us. We rescue dogs therefore they are always with me and rely heavily on the love...as I do :)

    Have a blessed day thank you again

  • APsnotFab Best to you and your pups!

  • Hi Becca,

    I hope you are going to stay at this place near the river with the singing birds and the sound of the breeze for a long time so you have time to rest a bit.

    It is good to hear from you as usual Becca but this time something stressful and different has happened to you.

    You had been working very hard with your body before you went away and then the chock with that lady that did not want to leave the house even if it was yours as I understand it. That was too much for our Sticky Blood and perhaps also a low level of INR on top of everything.

    I hope your "Norwegian Prince" is fine and that he can take you to your appointmen next week.

    Are you selftesting Becca or do you take LMW Heparin-shots as anticoagulation nowadays?

    Hope to hear from you very soon!

    God bless you Becca!

    Kerstin

  • Hello my sweet friend Kerstin

    Yes we purchased our home so this is home till heaven. My INRs were stable throiughout that is the baffling part. I am still self testing and am certain that the ability to self test keeps my blood stable as I am consistent with my testing and have now a few strong years of experience as to how to adjust between proper foods and medication dosage.

    My amazing husband is such a support. He cares so deeply and does all he can to keep things at ease to not encourage a flare.

    My question even further is has this happened to many folks? The massive jerking and shaking with the severe stuttering and cognitive struggles? I slept and slept and could not get thoughts out correctly. Good news is I feel I am climbing over the edge of it yet not all together completely.

    My INR jumped high into 4.2 yesterday. I feel best at 3.5 to 4.0 level. Fighting the fatigue has been a challenge since yet I'm walking daily regardless. A mind over matter approach.

    Big hugs and blessings.

  • Hi Becca,

    I am glad to hear that you are still selftesting and that you manage to keep your INR in range. An INR of 4.2 is quite normal.

    I understand that he is amazing as he is from Norway!

    This illness is very tricky and I have heard during my years on this site members with symptoms like that. Did you fall to the ground and were you unconscious any time also? Headache now?

    Jerking and cognitive struggles I have heard several members have here. Tiredness follows on such an event and not thinking correct is very common. You could have had a TIA or a mini-stroke and I think you should find out and talk with a Doctor who understands. Test your blood rather often now to know that you are not too low in INR.

    Kerstin

  • I am a fan of Norway indeed ;)

    Yes I did fall a few times, I could not stand well for several days. Still struggling with a straight walk yet I'm doing much better and am back walking the river trail slowly. Not much steam in the engine so to speak but I'm pushing in a gentle way. Refuse to let this win. Headache following was absolutely horrid for quite a few days, my husband would remember the actual amount of days, I think like a little more than a week if I were to add it up. Pounding headache, it overwhelmed me but my blood did stay stable, Praise God.

    I have battled slight headache since but nothing I can not work through now. That was not the case the first stem of it but I had help with both of our moms here with us helping. I rested much of the days to heal up properly. I am going into OHSU for exams and scans next week. I am able to send my doctors emails w/My Chart access yet I did not have internet during the bulk of the day of the attack for the first week. Truly I did not think they could do much and I simply chose to rest unless it became more unbearable. With Gods sweet grace and the ability to have help and self monitor helped I believe more than anything.

    They are doing a scan behind my eyes to make sure next week. Will keep you updated.

    Big hugs

  • Yes I agree shock and awe can put us over the edge! I went thru 5 months of despair with my husband having heart attack and cancer! Now that he's coming around, I neglected myself and the shock of the heart attack put me in a flare! So try to smell the roses now and c ur doctor and pleas let us know how ur doing!

  • Hi Becca,

    You're definitely not alone; 30 years of APS has taken a toll on my nervous system.

    First sign for me was about 18yrs ago; noticed I was running late one morning and got that little adrenaline rush one gets when anxious and trying to hurry while trying to get my kids' lunches made I noticed my hands were shaking and fumbling. It really caught me by surprise; I took a breath, made myself pause and then pushed thru.

    Over the years it progressed to what you experience, the uncontrollable body shaking, stuttering, weakness in the legs, headache, memory loss, confusion, eye twitching, seizures and such.

    I explain it to people giving them the example of a cup as one's nervous system and it can only hold so much, but then in addition to this my nervous system cup is damaged from the APS so it holds even less, so when it is 'full' it cannot function properly and starts to overflow, thus the symptoms appear. Sometimes, even though I've done everything right and have had no triggers it rears its ugly head, but for the most part I can manage now having learned what agrivates it.

    Fatigue is a HUGE trigger, also stress, dehydration, overdoing it, and going too long without eating. Combine any of these and it's almost a guarantee I'll become incapacitated. As soon as I notice any hint of a challenge I know I have to reduce nervous system stimuli immediately (turning off lights, putting on dark glasses and or a large brimmed hat, go to a quite area, no talking, close my eyes, not get chilled or over heated, etc.) to buy me time til I can lay down and rest. Sometimes just laying down in the car for 20 minutes along with drinking water can be enough for the nervous system to 'reboot'/ recover.

    One thing is for sure, trying to just push thru it is disastrous as then I 'crash' completely and can take days to weeks to months to recover then.

    Reguardless of how minor or how severe an episode has been, rest and full on sleep is key for the body to recover. If I don't give in and rest it just pushes my recover period further out.

    Sincerely,

    Karin aka Mancoca

  • So good to hear from you, thank you kindly for your share. I see then that I am not the only one that turns off lights and wears prescription sunglasses and have quite a collection of lovely hats as well now all for proactive solutions.

    Yes I am truly seeing that stress is a catch all for triggering some undo "episodes"...learning how to navigate wisely through the maze that comes with all of this. I too rely heavily on proper hydration and nutrition. Oh my goodness if I did not properly hydrate and eat well my body would simply say enough. Warfarin and plaquinil have truly been a life saver without a doubt. I wonder sometimes on how I made it so long with all the symptoms without a catastrophic event much earlier in life. When I first was told I would be on blood thinners for life I would cry and cry as so many have referred to blood thinners as "rat poisin" now I literally thank the good Lord for the miracles in medicine and the physicians that care so deeply for folks like us. They are life savers without a doubt and I am deeply grateful to have the support and knowledge that steers me in the right the direction and that allows me to live.

    Thanks again for the share...blessings to you

    Becca

  • This all reminds me of the spoons theory that I've posted on here many times. Basically we have to give ourselves so many spoons to cope with what the day throws at us, when they are gone or running out we have to start making choices about how we are going to keep going until the next lot of spoons. In short this is about pacing and you have given us and I myself, a very good reminder on how important pacing is with a chronic illness.

  • Moving house is up there as one of the most stressful events during a life time. I moved around 3 years ago, only ten miles, but it still took a long time to recover and the buying and selling was awful and the Estate Agent just frightful. I hope you are now in recovery from it all MaryF

  • Thank you to kindly for the encouragement and yes, reminder. Indeed the stress is a major factor. I have had the privilege of owning a non profit that served over 4000 people in need a year since 2003. Last year the difficult yet necessary decision to close the doors after all of this time came upon us when evaluating the need to deduct the pilings of what keeps my body down. We now continue with the non profit mission yet we no longer have the huge warehouse as it was a 24/7 mission. Since then I have rested more and balanced more of health which has led to a rise of my health no doubt. The move did indeed remind me of that time when too much was simply too much. Hard reality to embrace yet my husband and family are happy to have me more healthy vs loosing ground from the intense stress.

    Thank you again for reminder ladies. Thank you so much for all of your time and efforts here on the forum. Truly this forum has been a great source of understanding and encouragement.

  • Hey, sis. How ya bean? Did you get over that "set back?" I recently got another medical merit badge for completed cancer surgery. I had a naughty prostate and they got "most of it." I now feel fine. I think I hear a trumpet sounding. Do you? ;-)

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