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A note to Tearose


Merrill
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Tearose, when I read your note in reply to another's post that you had happy news to share re: your MRI, I shouted with joy! (I know these results do not end the health challenges you face, but I'm truly hoping that you walk with a lighter heart these days. Going through that sleep study followed by MRI was very stressful...) How are your spirits?

m

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Guest tearose

Hi Merrill! Yes, the MRI results show no lesion, tumor or stroke so that is all very good. I was hoping to give you all an update including the sleep study results, however the sleep study results are still not back. The frustrating part is that I still have the cognitive fog and some other neuro type "funkities" that need to be explained. I recently experienced three short episodes of trigeminal neuralgia (numb and electric feelings on one side of my face, and my color vision, sense of smell and taste are in decline)...I am delighted that the MRI shows none of the diseases they were looking for...I still sit on the edge of my seat wondering if I have MSA or early PD...I just was hoping for some answers. The very real frustration now, is knowing that tests can be inconclusive. I don't look to my doctors right now for validation to what I am experiencing, I was just curious whether my pots is progressing or if they even knew what was happening to me. I won't change the fact that I now have to re-examine my activities and make modifications...it would just be nice to know if these symptoms were connected in any way to pots or something else.

Thank you for asking about my spirits. I still feel very fragile. The constant bombardment of challenges can be/is wearisome. I keep saying my little phrases over in my head and prayers.....I cannot control what happens to me, I can only control how I respond" and "take small steps" and "live in the moment" and "follow your breathing"....I'm trying it all. I get very introspective at times like this. I suddenly feel so small and the planet seems so large. I am in awe of the cycle of birth and death and ask for the grace to complete my soul's mission honorably. I tend to isolate and think and pray and be quiet when things are this rough. That I am even writing now is a new thing! Thank you all for allowing me to open my heart here. I guess as hard as it seems right now, I know the tide will change and the process will continue until my last day...I am not depressed by this but rather motivated to make every moment count. That's probably why I'm tired, I don't have the energy to even be awake in every moment, yet I keep trying! Before the dx pots, I used to say "I oscillate at a high frequency". Now I understand that although this is true for me (and all pots people) I sure don't want to burn out faster in the process! This was some stream of consciousness writing...am I making my thoughts understandable? Thank you for listening and for being there...tearose

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Hello tearose, I wish I had seen this before my reply on your post to me. God Bless you for your tender-heart. Sometimes the best medicine is to open up and release fustrations. Your letter was put together so beautiful and stopped and made me think abit and also know I'm not alone. We can't change what we're dealt in life, but how we do handle it and is ours. I pray they will come up with some positive answers for you, in the mean time you keep that strong faith of yours okay. Please keep me posted on how things are gong.

Southern Blessings, Rita

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Hi Tearose,

I'm glad your tests came out okay. Having said that, I do hope your doctors can give you some type of explanation for your symptoms. For me, the "not knowing" was always the hardest part.

I've been where you were describing, where you feel in awe of all that is around you. I remember taking quiet walks down our little country road in my "recovery year" (the year after I got sick). It was like I'd never noticed how green the grass was, never listened to the wind whistle through the pine tress, never saw how blue the sky was.

Know that we are all here for you. I'll keep you in my prayers.

Michelle

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Hi Tearose -- sorry to be (what feels like) a long time responding to your post. I know what you mean when you say you feel fragile...it's a scary place to be...like if someone even gives you a sidelong glance you could fall into a million little pieces. The world can just be too much with us sometimes! The irony is, of course, that your post shows that there is a remarkable and deep inner strength within you--a kind of self knowledge that is special and rare. I hope that you're able to take the time you need right now to sort things through--and that perhaps this time of quiet will do mind, body, and soul an entire world of good. Keep breathing, keep saying kind and gentle words of comfort to yourself, and lean on your potsy friends here any time at all.

Best wishes to you,

m

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Tearose, I dont' have words to express all that I think. Keep peeking up out of that POTs hole and doing just what you are doing...pushing on and holding on and praying. I don't' know what MSA or PD is but did they rule out MS? I'm looking foward to hearing about your sleep study results too. I like your phrase "oscillate at a higher frequency"! You maintain such a positive attitude always...rub some off on me! I need to be more like you and be more positive and put more positive energy out there. You are an inspiration that will not burn itself out! You may feel physically fragile right now but your spirit is very strong...it comes through in your writing...and after all, that is the true essence of a person...the part that will last forever! You are in my prayers! Keep us updated please when the other results come in.

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Guest tearose

You all have been helping me keep one foot in front of the other right now, yes, for me this is a rough spell. I continue to have a delay in my cognitive skills and I flip my words both when writing and speaking. My pots symptoms are a little more pronounced right now too. I guess the way I'm thinking positive is by telling myself that "I'm just in a rough spell" and that things will improve soon or at least "I'll adjust to the new challenges". To answer a couple of your questions... MS did not show up in the MRI. MSA is Multiple System Atrophy and PD is Parkinsons Disease. Before people with dysautonomia are in the progressed "stage" of MSA or PD (for those curious, this is not the case with pure autonomic failure) they usually show specific problems on their sleep study, I will have the final report on Thursday. The preliminary report does unfortunately show that I am having sleep problems. I have 3-5 second brain wave awakenings many times, during sleep. I'm trying to think of all my questions. At the very least I understand that I clearly do not get restorative sleep. At the worst, well jut look at the information on MSA.. my internist already said that he will send the final report off to the Mayo Clinic in Minn. to have Dr. Fealey (the neurologist who I saw in February of 2003) interpret it...since they may not be able to understand it and interpret it fully here! I'll start a new thread on Thursday after meeting with the sleep study doctor...I pray for answers. I just want to understand what it is I am dealing with! The frustrations are "not knowing" and sometimes, "knowing more than the doctor" and then the ultimate "dealing with the diagnosis gracefully".

I am trying to figure out whether I should go on a three day "college looking" trip with my husband and son today...if you don't hear from me till Thursday, then know that it's not that I've burried myself in the mud but have gone on the car trip.

I think of all of you and send you the same heartfelt loving support I feel from you. It is amazing that although we haven't met, I can picture people like justme and his wife, ethan and his mom and Mighty and Teri...briar, merrill, jackie, geneva...faith, momtog, earthmother, michelle....and all...you are a part of my life!

... here I was a few seconds ago feeling alone and by picturing all you just now, the room suddenly feels crowded! Well, I've got to go and decide what to do, keep the party going...warmly, tearose

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