These past 2 months are testing my strength and faith and hope, but for my kids I have to have hope. Started with menopause, sudden, and then a horrible flare, plaquenil was helping, then got some side effects, had to take small dose, the 3 weeks ago had some severe uticaria allergic reaction, was in ER three days in row, where they have me steroid iv's and benedryl, and then the third time an ephiphefrine shot which caused my bp to shoot up to 220/110 and I got the worst headache of my life, stayed on benedryl for a week, the rash did not come back, so I am hopeful that is was allergic, now scared to eat, or take plaquenil, even though I had been back on for two months, they did Cat Scan, two MRI and could not find a bleed which is what they thought happened, just had a MRA a week ago, on Sunday my doctor called me at home and said I had an cerebral aneurysm, and I needed to be admitted to OHSU in Portland to meet Neurosurgeon. Was admitted, had to have a cerebral angiogram, a catherer through femur and had to have contrast die, invasive, now have hematomas and horrible bruising, they knew I was allergic too contrast de, so they premeded me with tons of steroids and bendryl, yet still had a reaction, but small, some areas of rash. They were able to look at the aneurysm close and said it it small 1mm by 2.5mm and surgery would be more dangerous than watching so now I have to have MRA's each year and if it grows they will attempt surgery.... Very weak, have not taken plaquenil, three weeks of stress and exposing body to allergens, having moments were I feel overwhelmed...anyone had any experience with aneurysms? they said it is small and to go live my life, but that if it ruptured I could likely die, but it is so small very unlikely, like less than 1% chance per year. I worry when I wash my hair, am afraid to sleep on the side I know it is at, I realize this is phobic, I am planning to get a counsler to help me make a plan on getting better and all I am supposed to be doing...weaning off steroids, starting forteo shots for my osteoporosis, go back on the plaquenil, add back on foods I am stressing over, and try to believe the aneurysm has been there for a while......
Lupus, Primary Sjogrens, Hashimotos, CVID, Osteoporosis
Bless your heart. My heart pours out to you during this difficult time. I do not have an Anerysm but do have cancer trying to live in my body. Friday I had a major breakdown finding out it was further than what was originally stated. My nerves went haywire. I could not pray, I could not think, I could not breathe. I had to stop and let God. I went to my church and sat at the alter. How do I battle this, I didn't know. Just started getting one diagnosis after another 5 months ago and now this. Well I am a faith believing, know from where I have been brought from and I know that if I can just breathe, relax, put positive people in my midst it will help me take stock of the beauty around me and enjoy my life one day at a time.
My children need to see me go through this with as much strength as I can. I have to enjoy them whatever moments I have and not look back but look forward to the future.
Please find wherever your strength lies. We are here to back you up. We are here to cheerlead for you. We are here to say Just Breathe and we will breathe with you.
I know what it is like having paramedics constantly taking me back and forth to the hospital, MRIs CATs, PETSCANS and the list goes on and on. I don't like living with daily pain. I DO LIKE THAT I AM STILL HERE.
We will help love you through this. I will send as much positive aura (hopefully I spelled that right brain fog) your way. Check in whenever you like.
Peace and Blessings
Dearest Mollie,
Although I have never experienced an aneurysm, I am sending good vibes, comfort, and prayers your way. Angeldancer said it best, "let God".
We are here whenever you need us.
Hugs
Powderpuff
Mollie,
My heart goes out to you as well... I'm praying for you. Angel said everything so beautifully, I have nothing to add, but only to let you know that the there's another person praying for you. You have the Author and Perfector of your faith to go to and we're going with you.
Peace be on you and your family.
Hugs
~Andrea
mollie angel,
It has been found, and you will be helped through this.
Of course you feel like you have a time bomb in there.
You will stress, it's normal. Take as much support and help as you can.
Breathe breathe breathe.
I think some calming medication would be in order, IMHO. At least for this initial time.
I have found that we get used to almost anything, eventually.
I know that sounds strange, but i really do think you will learn to live with what you must live with.
We are here for you. And a counselor is a great way to take care of yourself.
Caring for yourself and your body..........with love.
Hugs, Elaine
thanks, I am mostly worried about the flare and fearing going back on the plaquenil. although I had been back on it for 2 months, it does not seems like a allergic reaction would take that long, or it would have came back because it should still be in my system. The allergist has me freaked about a lot of stuff, worried I am hyper allergic, which I am, but she was cutting out all kinds of stuff and making me feel worried, which is now affecting all I eat or swallow. My doctor just prescribed restatsis, which I have not started, anyone find that helps? The aneurysm worrys me, but it seems like I have the same chance of a stroke, heart attack, cancer.... of it rupturing, so kinda does not make sense worrying, just knowing it is there is upsetting but I am sure they are other things there that I know nothing about. Would NOT want too!
Mollie - OMG - you have been on quite a nasty ride lately. I'm so glad that you are seeking some psychotherapy to help you deal with this roller coaster. (((HUGS)))
Quote from: mollie carey on November 17, 2013, 06:32:38 PM
thanks, I am mostly worried about the flare and fearing going back on the plaquenil. although I had been back on it for 2 months, it does not seems like a allergic reaction would take that long, or it would have came back because it should still be in my system. The allergist has me freaked about a lot of stuff, worried I am hyper allergic, which I am, but she was cutting out all kinds of stuff and making me feel worried, which is now affecting all I eat or swallow. My doctor just prescribed restatsis, which I have not started, anyone find that helps? The aneurysm worrys me, but it seems like I have the same chance of a stroke, heart attack, cancer.... of it rupturing, so kinda does not make sense worrying, just knowing it is there is upsetting but I am sure they are other things there that I know nothing about. Would NOT want too!
Mollie
Take a deep breath, and let it out slow. I know it's a lot to digest and having been told you have a cerebral aneuyrsm on top of everything else IS scary.
Now, on the allergist. Try not to freak out. I happen to be hyperallergic and that part is manageable. But it does take time to sort out what exactly is the med or food or other allergen that is causing the reactions. Allergist is cutting out lots of stuff as it's necessary to identify what is the culprit. Once the culprits are identified that are either allergens for you or intolerances or sensitivities, it won't seem so huge as it does now.
Sometimes they have to cut out all kinds of stuff to get you to a baseline from which one thing at a time can be introduced to see if you react to it or not.
Quotemaking me feel worried
Mollie, no one can make you feel worried. This is how you are reacting to the stuff you're going through right now. Every one of us chooses how we react and respond to every situation.
Somehow, try to find a balance and whatever method of de-stressing that works for you, whether it be meditation/long bath soak. exercise...decompress a little. Take a "brain break" from all of these worries for an hour. Won't seem as overwhelming and huge after "brain break"
I know the aneurysm is scary, but on that part - as your doc said, it's small and go live your life. Well, I get it that it's difficult to do with everything else going on with you medically. Plus it sounds like you haven't even had time to digest that news.
Just for now though, focus on what you CAN do something about.
Now, on the plaquenil - did allergist give an opinion on that being a problem for you from an allergy perspective?
Your question about Restasis. I've been on it since March and it made a huge difference for my eyes. Since you have so many allergy issues going on, it's a good idea I think to touch base with your allergist.
Hugs and Prayers,
Amanda
true I have not quite had time to accept the aneurysm but it is not in my control, I really want to go back n the plaquenil because my flare has gotten much worse, and I am having weird slow heart beats and PVC constant because the allergist had me go off fish oil, choline, and vit d, and she does not think it was the plaquenil, or does my rheum but my internal doc keeps bringing it up. It is hard, I feel like my body is giving out, I am in menopause new, in the past 3 months, and find myself tearing up, thinking I need to say goodbye, and then I try to shake it off and get back to me, and focus on my goals and trying to get better, it seems overwhelming. The diet, the pills, now the forteo shots, which has black box warning, but my bone density is so bad, I have to do it, and then just trying to get out of this flare, and gain weight back.....I think journaling would help and I could see as I get things done, I do better with list, if that makes sense.
Hello Mollie-
I think journaling is a good thing. Write down your feelings and also health related stuff. A health journal to see what is working or not that you can share with doctors and another just for all the stuff you are thinking. Putting it on paper gets it out of your head. Don't think - just write and close the journal when done writing.
Having a good support system of family and friends and others who understand some of the health issues is good to have too.
OHSU is one of the best places for you to have been seen and treated.
I live in Salem and have been so pleased with every doctor who I interacted with there.
I don't have your specific health issues but I am no stranger to myriad of tests and diagnosis.
Enjoy each day and try not to focus on the negative things you have no control of.
Our attitude is a major factor in how we feel. We cannot control everything we have happen to us but we can control how we react.
Take care Mollie. Breathe.....
Mollie dear, I am so sorry to hear you are dealing with all these things. It is very normal to be concerned. Especially about what you can't control. I am praying for you, and others who are going through something out of their control. I believe very deeply in prayer, so I know that God is the one who is in control, and he will have you day by day in his love, and help you with all of it.
I never come here to preach anything to anyone, just expressing my faith with prayers for everyone.
You take care, and yes we are all here for you.
We are all here for each other to help, and love each other along this journey.
susanep :)
Quote from: mollie carey on November 17, 2013, 07:29:38 PM
true I have not quite had time to accept the aneurysm but it is not in my control, I really want to go back n the plaquenil because my flare has gotten much worse, and I am having weird slow heart beats and PVC constant because the allergist had me go off fish oil, choline, and vit d, and she does not think it was the plaquenil, or does my rheum but my internal doc keeps bringing it up. It is hard, I feel like my body is giving out, I am in menopause new, in the past 3 months, and find myself tearing up, thinking I need to say goodbye, and then I try to shake it off and get back to me, and focus on my goals and trying to get better, it seems overwhelming. The diet, the pills, now the forteo shots, which has black box warning, but my bone density is so bad, I have to do it, and then just trying to get out of this flare, and gain weight back.....I think journaling would help and I could see as I get things done, I do better with list, if that makes sense.
Journaling is an EXCELLENT idea. And yes, it makes perfect sense that you would do better with list.
Which doctor manages your osteoporosis? I ask as you indicated your allergist pulled you off Vitamin D as well. The concern there is D plays a vital role with calcium and bones. If you were pulled off the over the counter D supplements, you may want to ask about the Rx version which is activated D. OTC D supplements are the inactivated version.
Menopause on top of everything else. When it rains it pours. The hormone changes with menopause is enough to make anyone teary. So when those moments hit, if you're able to take a few moments to yourself and cry it out. I don't know why, other than maybe it's a woman thing, sometimes a good cry seems to be helpful oddly as a stress reliever. Especially when the plate gets overwhelming.
A favourite quote of mine: "Tears are the words of emotions."
Okay, on the plaquenil, sounds like the only doc who objects to it is your internal medicine doc. Has that one explained at all why he/she thinks plaquenil is a problem for you? If not, you may want to call that doc and ask that question. Meanwhile, you have two out of three doctors saying it's okay to go back on it. So that comes down to your own judgment call on that.
Is your internist aware of the weird slow heart beats and PVC constant? If not, it merits a phone call and possible office visit. While it could be related to being pulled off your supplements, it's possibly circumstantial and not related. So needs to be checked out, in my view.
Now has allergist suggested or performed any tests on you? For example, when I was having reactions to fish oil supplements, my allergist did blood tests for allergy to the possible seafoods mentioned on supplement bottle. Some things they can also skin test for. So those are questions for your allergist.
When it comes to foods, seems that the consistent practice is still the elimination diet and gradually adding one food at a time to discern which is the problem.
While it can seem and feel overwhelming just on the diet changes for you, it has its value especially if you do have food allergies or intolerances. I never would have even guessed I had gluten intolerance until inflammation started getting much worse even though I was doing all the right things to control it. Then in less than a week both my rheumy and my endo said go gluten-free and see if it makes a difference. Oh yeah, it made a huge difference. But that is me and might not apply to you.
Now, when you start your journal list - first list out everything. Then from that list, start a new page with two columns - one CAN do something about, the other NOT within your control. Then focus your energies on what you CAN do something about - start with the simple stuff on your CAN do list.
Another thing you CAN do, concerning meds and supplements - especially if some of your allergies have been identified, such as that contrast medium you were recently given. Pharmacist is a good resource for identifying cross-reactions or contraindicated meds and such based on identified allergies and medical conditions. Mine has bailed me out of potential trouble a few times over the years.
Have any of your docs run recent panels on thyroid, Vit D levels and calcium? If not, worth asking the question that one of them do that.
Especially given the low bone density and being pulled off D supplementation.
And I join susanep with Prayer support.
Hugs
Amanda
Dear Molly,
I am sorry you are going through this. The advice you've been given is excellent, so I will just
share my brain aneurysm experience. Almost 3 yrs ago, mine was 'incidentally' discovered during an
MRI to check causes of dizziness and intermittent headaches. This was before I had ever heard about
Sjogrens (don't know if it is connected, but isn't everything?!) although I was chronically ill - still
working 48 - 50 hrs a week and pushing, pushing...
Since the aneurysm was 4.5 mm, the neurosurgeon decided to insert a platinum coil and a stent to
keep it in place. This was done by running a catheter through my groin up to the brain, so no invasive
surgery. I Know how extremely lucky am I. I have an MRA every year to check that it is safely
tucked in. If my aneurysm were smaller, I would be doing the same thing as you - no surgery & an
MRA once a year. My surgeon is world class - I just happened to live close enough - and he said
anything smaller than 3 'just' needs watching.
Hang in there; we are in constant malady management mode - this site is our 'port' in the storm
Forgive me for the cliche!
Cliche? Oh P Trish, it is just the truth, said poetically.
Hugs, Elaine
thanks to all of you and thanks for sharing your story Trish, I totally get the mode of this right now, I am worrying, scared, thinking bad thoughts about the aneurysm. Mine is 1mm by 2.5mm. Did your doctor tell you some aneurysms never grow?
Molly, my neurosurgeon did say that many brain aneurysms never grow, so as long as you are getting checked, you will be fine. We are both so fortunate that our aneurysm was discovered in time. Have a good Wed- I hope you are feeling better.
thanks again, it is nice to hear encouraging words. I am feeling still out of it, in a flare, not sure if angiogram should make me this tired after, were you tired after the angio?
I was more tired than usual after my angiogram; I think any procedure (or test) exacerbates our fatigue. I was back to my normal fatigue level within a few days :)
warm hugs to you
P. Trish?I think you are right. I have not had so many procedures in all my life. The other day I had a pelvic ultrasound and literally when I got off the table I lost all muscle control. They had to get me dressed to the bathroom. It was quite scary because that has never happened before. I guess we have to right down everything from this point on so that doctors can keep accurate records.
MOLLIE>> keep your head up. You will be ok. God is able.