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Yearly Update: Pots, Dys, Mcad, Ed, Cfs/me & My Doc (Tennille Here)


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Hello all.... it had been almost a year since I have been on here. I hope some of the ones that know me are still here too as I've had a few to email but I haven't done well on responding to anyone for a long time.

I am treated for all thee above in the heading.... also including blinding migraines, gluten intolerance. (just giving new ones an overall of what im being treated for ;)

I am on: Klonopin 0.5 mg twice daily still..... we tried to wean off, but found it was detrimental for POTS & DYS and severe anxiety that i didn't realize I had. Tramadol 200 mg daily for energy. Also, the extra that i keep treats my TMJ that seems to be bothersome almost continually due to the elhers danlos. I am also on Cromolyn Sodium 1 vial 4 times a day.... this is for the MCAD and has saved my life, literally, twice. (I owe this live saving to Dr. Diana Driscoll, who called my doctor, Dr. Reid Blackwelder to put me on this..... as when folks have MCAD, we are quiet prone to sepsis attacks and I have had 3 life threatening ones in the past year.... last march, it attacked my jaw, face swelled big and fast, lost most feeling in my chin and jaw, and the infection ate up part of my jaw. There was no cause for the infection, other than the sepsis attacking... ) I am also on Marniol (the THC pill). I juice, organic veggies and fruits with a mastisizing (spelling?) juicer.

We have found that this med regime works best for me, but i plan to try to get off all meds in the next year or few, if possible. I still have ups and downs. and this past year has been a battle.... still a battle but much easier battle at times. I am still disabled. However over a year ago, I took the perspective of treating this spiritually, with my doctor as support. I have done daily meditation for well over a year, and it has helped the most. I also, attack fear head on. Fear, is the root...... so that is one of the things i personally work on. Fear can disable you and can have such an influence on this disease(s). (that is just for me... i understand most will not get that statement... but I am going at this with a different perspective.... as i aim to beat this even at a very severe state as i have been in for the past 3 & 1/2 years.... however suffereing over 10-11 years now).

My doctor and i have made alot of progress, yet many setbacks, as I am his first patient with these illnesses and we both learn from each other. He is a mind body spirit, integrative doctor. And I did feel the need to mention him here today as he is now the President of the American Acadamy of Family Physicians, he is a rare case doc and he also leads teams of docs, and is professor at our local Quillen College of medicine. Dr. Reid Blackwelder.

I have had successful ostepathic treatments for the jaw and other pain ailments, in order to keep from adding more pain med. Id rather stick with tramadol than take lortab, as hydrocodone type meds make me feel worse.

I still have so many symptoms that are just too many to mention, however they are suppressing some as I have went along in meditation and alot of peace and silence this past year, as i have had alot of battles to fight. I still have potholes and down times. I still cannot perform in society as society would see fit, but i am making some progress. I have less bedridden days. But i give out in just an hour or two, sometimes i can handle up to 4-5 hours in getting out, making myself move around, doing something.... even if i have to take breaks frequently. going out is still an obstacle, as i can only make it about an hour.... once i get to 2 hours, i feel the symptoms coming on and have to get home quick to lay down.

Anyways, most of all, i have a different perspective and outlook on all this. I see it as beauty in the making. I will not let it beat me down to nothing but pity for myself (and that is okay too, i have been there... i NEVER JUDGE.... i know the darkness. I have already lived that far too long. And once i started changing my outlook, things got magically better, even if physical symptoms still persist.

I want to give a huge thanks to Dr. Diana Driscoll, who without her, id be.... not alive. She called my doc, and my doc had the ER set up for cromolyn sodium when i underwent a second upper jaw sepesis attack of where we were afriad it would go to the brain, as each attack progresses extremely fast and gets out of hand very fast.

I also have to mention my doctor again. Dr. Reid Blackwelder in Kingsport, TN. This man is a rare, very rare gem of a doctor. He is changing the medical field, fervently and as much as he can and as quickly as he can. I wanted to add his picture here due to his recent elected President over the AAFP (national folks, and he has lots of hands on in the decision making of our future healthcare.... and he is spreading the word on our diseases here plus training his doctors/students/residents in the treatment that is working for me. WE ARE BEING HEARD, even if by one doc in my local area, who, however, has a national presence now, plus as i said, he is teaching his students/residents as he is learning from my disease(s) So, a school, with students, being taught about all this and that we exist :)

Here are 2 links of my doc: (to the forum moderator women, Im not sure if this is allowed, but i do not mean it as advertisement.... i just could not find a link online to our recent newspaper article and due to the fact that my doctor is in a way, spreading awareness and making a difference on many aspects. I felt compelled to share him, and that his is an integrative doctor. Perhaps this can help others across america find a better doctor with different appraoches. )

https://www.facebook.com/photo.php?fbid=538022552887657&set=a.298122656877649.71985.218197141536868&type=1&theater

link number 2

https://www.facebook.com/photo.php?fbid=538022946220951&set=a.298122656877649.71985.218197141536868&type=1&theater&notif_t=like

the links are only for spreading word about Dr. Blackwelder and what he's doing to change the medical field, doctor's treatments toward patients (he is a biggie in this, patient treatment, as in, how doctors attitudes need to change) and more.

Despite still fighting what we have.... I am very happy, & loving life, even if i feel crappy daily... even if i cant function mostly.... i really do love life and i plan to live and overcome, in whatever ways that may be :)

I also am homeschooling my 8th grade daughter and 10th grade son now and it has been pretty cool, even if i am sick. It is turning out so well.

I love you all..... much peace and progress of health to all aspects, to each of you on here

tennille

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So glad you sound like you have found a great path for yourself! Wonderful and encouraging and you will surely keep healing.

Can you answer if anything helped your migraines? And anything specific for the fatigue?

Best wishes!!!

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So glad you sound like you have found a great path for yourself! Wonderful and encouraging and you will surely keep healing.

Can you answer if anything helped your migraines? And anything specific for the fatigue?

Best wishes!!!

I actually do not take anything for the migraines. I have had them since 7th grade, they start with my vision 'being taken away' by at least 75%. (always frightening, but over the years i have managed to let that fear go, which lessens the whole migraine).... somehow my migraines over the past few years have evolved into what i call 'silent migraines'.... as in, i still have the blindness, but the headache, light sensitivity and vomiting, etc dont' seem to happen. I think in the past 5 years, i have had perhaps 2-3 full blown migraines and would go to the ER and ask for a shot of imitrex (which i use to keep at home but when they starting changing, i stopped needed them since i had no more pain really). So.... for that, it just kinda went that way.

However, alas, I do still have a daily 24/7 headache, but the tramadol seems to keep that underway until we figure out why i have had this headache for years on end.

For the fatigue.... oh my, it seems to me that I would be the world's worst with this. As it is my number one symptom. It literally paralyzes me.... literally. And the ONLY thing, the only thing we have found to work to give me energy is tramadol. That one med, if i take it by 7-8 am... i can actually accomplish some things in a day's time. But, not everday is functional with it..... But it makes a huge, huge difference in the energy/tired/exhaustion area as i have felt sucked dry for many years but i take the tramadol and in a lil bit, i FEEL ENERGY. Some days alot of energy. And for some reason, the tramadol has an overall effect of 'suppressing' the many daily symptoms i have.

(and we have tried everything we can think of for energy, yet this one med is the only that helps.... unfortunately, my dosage is a high dose though. Some on here can get by with 50 mg a day. For me, 200-400 a day. Not sure why.)

thanks for the uplifting words!!! Yes, I have been on a whole new path. Organic eating and juicing, meditation, and a very bright attitude and outlook. However, i still have my bad days where my attitude isnt' perfect, but hey.... look at what we fight ;)

Love and peace

tennille :)

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Hi Tenille,

Nice to hear from you and I enjoyed your links to your wonderful doctor. I don't blame you for wanting to brag on him! Best wishes in your path to wellness,

Marsha

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Tennille, I remember you and I'm so glad you posted and updated us all. Your update really encourages me.

I'm living about a half life- half crashing in bed and half feeling ok but not great. I'm doing better at learning to live with it but your message comes to me at a time where I need some real encouragement. And Im very excited to hear about your doctor helping to spread the word. It is so needed. Thank you. God bless!

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I was also just thinking of you a few days before you posted. So glad to hear from you and know you are a bit better. That infection you had in your jaw last year (and its late diagnosis) was so scary. You mention you have EDS. I do also and never realized until I got on an EDS forum how many of us have daytime sleep disorders such as hypersomnia and narcolepsy. You mention you still struggle with fatigue. It may help you to go to the forum called Inspire at ednf.org and search hypersomnia. Prior to POTS/MCAS/EDS I didn't know a soul with hypersomnia or narcolepsy but there are lots of people (compared to the rest of the world) with EDS that seem to suffer with this too. Anyway, it's wonderful to know you are in a better place. Take care.

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