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angiern
08-01-2006, 02:36 PM
I got a call from the Rheumatologist today. All my tests came back as she put it "essentially normal". She said she ran tests for Sjogen's, Lupus and Connective Tissue Disease and they were all normal. So I guess I should be happy that I really don't have this disease, but I'm depressed because apparently this is all in my head and I need a psychiatrist. She did not tell me I needed one, but I feel like I do. She said that all of this does not make since and we need to kind of back off some of the meds and see where we are after awhile. I told her that I felt like I wasn't being believed and people thought I was making this up. She said that we just need to go in a different direction. You all have been very helpful to me in the short while I have been posting, but now I feel like I don't belong here, so I guess I won't be posting anymore. Good Luck to you all.

Angie

Sunshine101
08-01-2006, 06:04 PM
Angie, Angie, Angie: I think it is safe to say that no one here thinks that you are making ANYTHING up. I also am willing to bet that most of us, if not all of us, had to go through many trials and tribulations before we found our "set in stone" diagnosis. So many illnesses have the same symptoms and many diseases are dual diagnosis as well. Don't give up and don't go away! This place is so tremendously amazing and I truly believe that the other members would want you to stay on board too. Sometimes we just need a place to belong and we will all continue to be here for you girlfriend! Sunshine101

browneyedgirl53
08-01-2006, 06:25 PM
Angie - Finding this group of friends came as no coincidence. Please don't feel like "it's all in your head" - remember medicine is not an exact science; it never will be. Don't be satisfied with accepting that there's nothing else to do.

I agree with Sunshine - we all are looking for a place to belong; a place to share our thoughts, beliefs, concerns, tears....and yes, even laughter. There are a few funny ones left in this world - and God knows we have enough to cry about....so why not laugh a little.

So stay strong, hold on - and Sunshine is right. A since of belonging does a heart good.

Life is good, love is better
Browneyedgirl

angiern
08-02-2006, 02:34 AM
Thank you so much for your words of encouragement! You all are the best there is. I am grateful that you still want to include me because Lord knows I need someone there for me who has and is going through this too. My husband is absolutely out of this world wonderfully supportive, but he can never truly know how this feels. Since you all don't mind I'll stay a little longer. I have to drag myself to work now. I hope you all have a blessed day.

Angie

TracyDawn
08-02-2006, 04:35 AM
I WISH I had a dollar for evertime I was told that it wasn't lupus, or it wasn't this or wasn't that. They thought they could tell me what it wasn't and make me feel better when all I wanted was to know what it WAS. It took me seven years, lots of denial on both my part and the dr, many drs and I now have a firm diagnosis. So just because those tests came back that way THIS time doesn't mean you are losing it. Even now on my worst days mine can come back normal. As I said before, it took a biopsy from my back, along with all my other symptoms to get my dx. So please don't give up and for sure, don't go away. Just take it one day at a time and ask that dr of yours what it IS, tell her you don't care what it isn't at this point but you need some answers. {{HUG}}

angiern
08-02-2006, 06:27 AM
Thanks Tracy Dawn! I know I am taking this too hard, but I get so tired of trying to make the doctors believe me. Sometimes I just want to stop all the meds and just forget about the whole thing. However I know if I did not take the meds there is no way I would be able to function. Well I did ask the Rheumy what it was and she said she had no idea as none of this made any since. She said that with the symptoms I am having my labs should be really really positive, but they are not. I told her again that I didn't want it to be Lupus, but I do want to know what it is so I can treat it and live my life. Gotta go back to work now. Talk to you later!

Angie

stjames13
08-02-2006, 07:13 AM
8)
ANGIE,
NOT that I want you to have LUPUS or any related disease,but to go from REAL symptoms to say it's all in your head is well.....BS.

For you to have dealt with all you have there is NO WAY that it is NOTHING.
It may not be LUPUS but it may be a form of LUPUS, or another
AUTO-IMMUNE DISEASE.

It took a GOOD 6 months of doing alot of the SAME TESTS until I was finally diagnosed with SLE and DISCOID LUPUS.

THAT is the TOUGHEST part of this disease....attempting to diagnose it is the HARDEST part other than trying to get rid of it.

You'll get 50% of the time FALSE POSOTIVES AND FALSE NEGATIVES all depending on how your system is doing that day.

If your tired you may come back with a DIAGNOSIS OF POSOTIVE because certain enzyme levels are LOW, but if your well rested and feeling GOOD it may come back NEGAITVE.

DO NOT LET ONE DOCTOR make you think that your NUTZZZZZ :shock:

ONE DOCTORS DIAGNOSIS DOES NOT MAKE A FULLY EDUCATED DECESION.....
If he's so sure that you do not have LUPUS and HE"S POSOTIVE YOU NEED A PSYCHIATRIST.....maybe it is he/she who need BETTER BEDSIDE MANNERS !!!!!!!

I HATE these DOCTORS who think because they wear the WHITE COAT they THINK they know it all.
With all the problems I have auto-immune and physical I have done more research and found out more treatments and possibilities than my doc has.

Alot of these DOCS also look at your insurance and see how much they'll cover and run the bill to that point and then make an UN-EDUCATED DECESION !!!!!

If you are going to a man then go see a woman.....or visa -versa.

WOMAN DOCTORS tend to know more about LUPUS mainly because only 1 out of 1,000 who have it are MEN !!!!

Plus what KIND OF RHEUMOTOLIGIST has the training to say YOU NEED A PSYCHIATRIST????...
Personally I would have taken that remark as an INSULT asked for copies of all my records and LEFT ABRUPTLY !!!!

Where you will find some of the best yet the youngest DOCTORS who will do everything in there power to get the right DIAGNOSIS with no QUESTION is by going to a teaching HOSPITAL.
IE; ROBERT WOODS HOSPITAL, UNIV OF PA , any UNIVERSITY HOSPITAL.
This way you have one main doctor but you have a DOZEN very intelligant, and very curious yound interns out there that will do a test that the KNOW IT ALL may not...which 9 out of 10 times leads to something else which puts them on course to get the right answers.

MY LUPUS was DIAGNOSED when I was in for my THYROID problems and had numerous DOCTORS tell me I was negative for LUPUS until I went to ROBERT WOODS FOUNDATION in NEW JERSEY.
There they went through my LIFE history, they did genetic tests, they did every possible test that may cause even ONE symptom that LUPUS PRODUCES.

I would be the FIRST one to CONGRATULATE you on the GOOD NEWS but that part about it being in your head well NOT ONLY was it out of line and RUDE...it is not in his/her rhelm of knowledge....and quite frankly way out of LINE :shock:

Ask yourself do I have these symptoms???......
If you have more than 50% of the NORMAL symptoms then may I suggest you go to another RHEUMOTOLIGIST and POSSIBLY see a HEPATOLOGIST....a doctor who is into BLOOD....
You would be surprised the difference in what test that one will do that the other won't.

DO NOT allow them to make you feel even worse and waste VALUABLE time going to a psychiatrist.....
Let me tell you this..... ALL and I mean ALL psychitrist's are trained to diagnose SOMETHING within 15 minutes of talking to you....
I found this out through a family member who is one !!!

EVERYONE has some kind of mental traits( sp?) that can be classified as something....I GUARANTEE they will go from DEPRESSION to possible
BI-POLAR...to - a SOCIAL PROBLEM making you feel like your nuts and MUST HAVE ATTENTION !!!!

TRUST ME IF you go that way I can GUARANTEE you that they will put a LABEL on you and one you do not need nor want nor deserve.

Just get your records and go to a HEPA/ OR HEMA tologist and let them do there thing.
DO NOT IMPLY that YOU THINK it is LUPUS...just give em all your symptoms ( and may i suggest a WOMAN) and let them do the diagnosing....then as they are coming close to some kind of DIAGNOSIS then you pull out all your past test and compare what they did vs. what the OTHER JERK with the BAD BEDSIDE MANNERS did and said and I'll bet you get different answers.

If you have as many symptoms as you do that the first Doc at least THOUGHT it was LUPUS then there must be a reason why he/she went in that direction.
You may have a THYROID problem, or chronic fatigue, or Hormonal problems....but you certainly DO NOT need a psychiatrist.

PLEASE DO NOT GO TO ONE AND LET HEM START MESSING WITH YOU !!!
YOU WILL END up in a mental facility while they fool around and decide if your stable....well if you were not stable then you would have never been able to put all this together.

YOU OWE it to YOURSELF, YOUR FAMILY to GET THE RIGHT ANSWER not ONE DOCTORS FINAL DECESION and RUDE RECCOMENDATIONS !!!!

Think about all I said and make your decesion, but I sincerly DOUBT that a psychiatrist is gona be of ANY help..
If anything they'll make make the situation worse as I said they MUST DIAGNOSE you within 15 minutes with something....and they will and that is all PRECIOUS TIME YOU NEED TO BE SPENDING ON GETTING THIS ONE THING SATISFIED IN YOUR MIND !!!

I hope you do the RIGHT thing and PLEASE take another chance but this time try a TEACHING hospital and a WOMAN DOCTOR.

Let me know how you do.....

St James
8)

angiern
08-02-2006, 04:18 PM
I had no idea you all would be sooooo supportive of me and my trials and tribulations.This is exactly why I came to this place. I might have misrepresented what my doctor said though. She did not come out and say I should see a psychiatrist, she made me feel as if I should. After reading your post and all the others I have absolutely no intention of being labeled a mental case. I know how my body is and there is something wrong. The thing that has been the hardest for me to understand is how the Rheumy can go from saying "That's a malar rash if I have ever seen one and with all your symptoms this is SLE and we need to get right on treating this aggressively!" to "Your labs all came back negative so I think this is probably not Lupus we are looking at and we should step back and take some time and back off the meds." in the course of a week. Why is so all fired important to have that bloodwork be positive. The ACR criteria makes it seem like it only has to be 4 of the 11 at any one time. It does not say that one of them has to be positive bloodwork. Well I have to go eat the wonderful dinner my terrific husband cooked now. Thanks for everything and I guess I still belong here.

Angie

Saysusie
08-04-2006, 11:22 AM
Angie;
I can only "ditto" what everyone else has said to you (especially St. James) and to let you know that you do, indeed, belong here as long as "here" is where you want to be!!
I am happy to see that you've decided to stay and we are all breathing a sigh of relief that "Angie is staying home with the family".
Please keep us advised of what is happening and we will always continue to help you as much as we can!

Peace and Blessings
Saysusie

angiern
08-04-2006, 02:53 PM
I really feel like God sent me here for a reason! It may take me awhile to figure things out, but I am not going anywhere until someone makes me.


Angie

tbritt
08-08-2006, 06:41 PM
Angie-
We seem to be going through the same things right now. I have also had a hard time getting a definite answer/diagnosis. I was so excited when I found this forum. I began to visit everyday...seeking validation from the members here because I wasn't getting it from my "team" of doctors. I cannot count the times that I have read posts here and sat slack-jawwed because that was exactly what I was suffering through at the time. For the first time IN MY LIFE I felt comfortable discussing all my various ailments. I didn't feel like people were saying, "Oh, my God, would you just get over it already?" Anytime that I have discussed my health with friends/co-workers, etc., that was the impression that I got from them. I was never looking for sympathy, empathy, or attention. I was merely desperate for answers-grasping at straws. After my last major flare, I was sure that the doctors were going to figure all of this out and I would at least be able to formulate a plan of attack. All the testing, waiting, re-testing, waiting, wondering, doubting...the constant nagging doubts in the back of my head-maybe I AM crazy?-the whole vicious cycle was really making me insane. I, too, began to feel like maybe I shouldn't be here. I mean, nobody has really come right out and said, "Yes, Tori, you have lupus. You have probably had it for years and years. Luckily, we were able to find it this time. Now, go forth and be sick in peace." I began to feel like I was perpetuating a myth. Maybe I was enabling myself to be sick by reading the posts and drawing on all the similarities. There is an on-going power struggle between my mind and my body. In my mind, I thought that I could convince my body that it was not sick. Mind over matter and all that. If I admitted that I was sick, then surely I would be...like "if you build it, they will come." So I made up my mind to stop 'thinking sick'. I would be healthy and feel fine each and every day. It became my mantra. Also, I told myself that I did not need to come here anymore because this was for sick people and I was only crazy. I wasn't NEWLY DIAGNOSED or anything. What right did I have to come here? I was a fraud. Now, put your big girl panties on and quit whining I told myself. I quit coming here. Today is my first time back in a month. And guess what? I have worked out a lot of things in my head and I'M HERE TO STAY. I'm not crazy...I'm sick. Plain and simple. Whether I'm diagnosed or not, I'm sick. Whether it's Lupus or not, I'm sick. Whether I fight it or not, I'm sick. There is no denying that. No running from it. One thing that I have learned here is that it can be impossibly difficult to get diagnosed...like playing Pin the Tail on the Donkey in the dark on a Tilt-a-Whirl after a few too many margaritas. (At this point I feel like I should point out that indeed I am a TRUE Southerner and I believe out reputations for rambling on and on are well documented and established.) Having said all that, I will now get to the point, which is this: Even if we (you and I) never get an actual diagnosis, this forum has proven to be a place where we will be welcomed. People who suffer from Lupus and all that entails tend to develop such a deep level of compassion for the fellow man. I could probably complain of an ingrown toenail here and recieve more advice, sympathy, and GENUINE concern than if I walked down Main St. with blood oozing from every orifice. These people have been through the same things that we have--from the total creep of a boss not understanding why you just can't do it today to the doubting in-laws just waiting to pass judgement to the 6 year old child that can not only make supper for herself but for Mommy as well. I have the utmost respect for everyone here not only because of everything they have suffered through, but because of their desire to ease the suffering of others, whether through a few kind words, a link to a website, or online hugs. So, Angie, I want to say Thank You. Your post was the first one to jump off the page, and believe me when I say that I needed to hear this just as much as I needed to write it. I appreciate the opportunity to vent. Please know that anytime you feel like talking, crying, or laughing, I will do anything I can to help you through this. A loving and understanding husband is one thing, but a friend who knows exactly what your talking about (and doesn't have any ulterior motives:wink:) is another. Let me know if you need a shoulder.

angiern
08-09-2006, 04:08 AM
I too have resolved myself finally that I belong here no matter what the doctors say. It is nice to have someone who understands what it is like to doubt yourself and feel like you have lost your mind. I recently wrote a letter to my doctor who tells me one week this is definitely Lupus and then the next week says it is not(because the labs didn't come back the way she wanted them too). In the letter I explained to her that I really did not want to be ill, but I know there is something wrong.Even if she can't give it a name or decides to call it the common cold, I would appreciate it if she would treat my symptoms and let me live my life. I have not had a response from her yet, but I feel better just letting her know how I feel. Thank you so much for the lovely post you wrote and I am glad to have a friend out there who cares.

Angie

tbritt
08-09-2006, 02:00 PM
Hi again...Just the simple fact that you felt like you needed to explain yourself and/or your illness to your doctor says a LOT!! I really feel like you should think about changing doctors. I know what a hassle that can be, but if it gets you any closer to an answer, then it has to be worth it. She could be brushing you off in the hopes that you will change doctors because she doesn't like facing up to the fact that she is just not able to help you. I hope that isn't the case, especially if you decide to stay with her. Congrats on having the gumption to write that letter. I'm proud of you!! Keep me posted, ok?

Sunshine101
08-09-2006, 05:01 PM
Angie: Tbrit has a good suggestion. Even though it may be costly, you may want to try another doctor. Chances are that you will end up seeing lots of different doctors/specialists down the road. One thing that I have found helpful is to always ask for copies of lab results and reports. I have gotten MRI's and other tests saved to a CD. That way, you have your own stash and a good paper trail and you avoid having duplicate testing done. Now granted sometimes tests are rerun for various reasons, but it sure doesn't hurt to have a good record. Sunshine101

triciaf
08-12-2006, 07:36 PM
I haven't posted for quite some time but when I read your post about "not posting anymore" I felt as if I had written it. I'm still going through tests, not getting firm answers and feeling like I'm crazy. See, with me, when I was a little girl I always wanted attention from my Mom....so I would "fake" begin sick. It worked most times. Now I feel like I'm being punished or wonder if it really is all in my head!! BUT - I know it's not. And you know it's not all in your head either. Just like everyone else said - we have to hang in there. We owe it to ourselves and the ones we love to not give up. So hang tight, and I will too. Let me (us) know how things go.

Trish

Bama
08-13-2006, 12:39 PM
From a previous post you said you saw Dr. Fessler at UAB. If you sent the letter to Dr. Fessler she wonít write you back. I wrote her a detailed letter about my condition and how I felt she wasnít listening to me or talking to me, that I needed affirmation from her that my problems were real, and I didnít understand from my tests and symptoms why she couldnít diagnosis Lupus. I went to my next appointment after writing that letter and instead of it helping us communicate she tore into me. So I switched doctors and have found one that is much more understanding and supportive. He believes my symptoms and is willing to give me treatment to feel the best I can. Dr. Fessler wouldnít treatment me aggressively enough to be able to function. She is just overly conservative and I can appreciate she doesnít want to put anyone on harmful drugs if she isnít sure it will help. But switching doctors was the best thing I did Ė I actually didnít realize how bad I felt until I was finally treated appropriately. Iíve seen several doctors and they all had a piece to my puzzle so I wrote her an email explaining how all my pieces ended up fitting together and that I hoped by my writing her it would help with diagnosing other patients in the future and she never wrote back. Keep searching for a doctor you feel comfortable with Ė and donít let them make you feel like you are a doctor hopper Ė itís your health and you are just another patient to them.

angiern
08-18-2006, 05:33 PM
The letter I referenced was actually written to my new Rheumatologist in Pensacola. Her name is Diana Harris. I had not heard from her since I wrote the letter until I called her to advise her that I had Protein in my urine again at my Primary doctor follow up after hospitalization in July. I asked her if she received the letter and she stated she had received it and it was helpful and she appreciated my effort. However she did add that she could not understand what was going on with me because with all the symptoms over the years I should have some positive labs by now. She said she would just start for now by investigating the Proteinuria and go from there. She was nice enough when she talked to me, but I still got that creeping feeling that she might think I am a hypochondriac or its all in my head, etc. Now about Dr. Fessler. There were several things I did not like about her. First of all I do not like her rule about not allowing family members to come to the back for the consultation. My husband could probably tell her more about me and this stupid disease than I could! Next she is the one who told me and I quote"Wow That's a Malar rash if I have ever seen one!" Only to tell me it was Rosacea and Fibromyalgia when all labs came back negative. When I asked her why Prednisone made me feel like a million bucks and it is supposed to aggrevate Fibro. she had no answers for me. I really did not care for her attitude and what I like to call the cattle call her practice is. Am I ranting? Sorry. I have now seen 4 rheumys and am really beginning to think that I am crazy. When will this ever end? I am considering just calling it quits on the doctors. I am really tired of the whole thing. I am really glad you have found a doctor who believes you and is willing to treat you. I wish I could find one too. Thanks for listening.

Angie

Sunshine101
08-18-2006, 06:26 PM
Have you ever considered going to the Mayo Clinic or some other large clinic? I heard so many things before I got the SLE diagnosis in Rochester, MN. Locally I was hearing Fibro, Sjogren's, MS, Rhumy, Parkinson's, etc., etc. When I went up to Mayo, it took about five days of intense interviews with multiple doctors in each meeting and tons of lab work but I walked away with a definite answer. I am in no way "cured" but I certainly have a better quality of life. They issue you a patient card that has your Mayo number on it. That number is yours for life. You can call the Clinic, give them your number, and get to talk to a real doc or nurse for questions. They were also great in sending copies of reports to my GP where I live so that I wouldn't have to go back to Minnesota as much. I currently go up to the Clinic about once a year and my local GP calls them from time to time for consultations. I feel bad for you because I know how frustrating it gets when you don't get answers that you so desperately need! Hang in there... we will all keep you in our thoughts and prayers. Sunshine101

angiern
08-19-2006, 03:19 PM
I have never been to the Mayo Clinic, but Dr. Fessler who I refer to in the previous post is at UAB which is a teachung hospital in Birmingham. I really had high hopes for that consultation, but as you see it was just like all the others. My neurologist is currently doing some testing for CNS Lupus and mentioned to me that if it all came back negative, he might send me to The Mayo Clinc because they have a clinic that specializes in just CNS Lupus. That statement actually gave me a glimmer of hope. I am not sure if my insurance will let me go there though. I'll just have to wait and see. Thanks alot for your concern! I get so frustrated sometimes that I just want to give up. Maybe I will eventually figure it out though.

MARYCAIN
08-19-2006, 03:57 PM
I DON'T KNOW A CHILD ANYWHERE WHO HASN'T FAKED BEING SICK TO GET ATTENTION OR TO GET OUT OF SCHOOL OR CHORES - IT'S A NORMAL PART OF BEING A KID, AND YOU DON'T GET PUNISHED FOR IT AS A GROWNUP. GET THE IDEA OUT OF YOUR HEAD THAT YOUR ILLNESS IS A PUNISHMENT OF SOME KIND BECAUSE THAT IMPLIES THAT YOU DESERVE TO BE ILL OR THAT IT'S SOMEHOW YOUR FAULT. YOU DIDN'T DO ANYTHING TO CAUSE YOUR ILLNESS - IT JUST HAPPENS.

triciaf
08-19-2006, 09:15 PM
I'm doing my best. Logically of course I know I'm not being punished. The emotional roller coaster called immune diseases sometimes goes too far down hill, but inevitably starts back up again. I'll get to the top soon.

MARYCAIN
08-20-2006, 08:14 AM
at the Kirkland Clinic there in Birmingham. Even though I already had a lupus diagnosis, treatment wasn't working well, and my rheumy wanted me to go to a teaching hospital to see if they had more treatment options. Total waste of time - doctors were very arrogant and acted like I was a 2-yeaer old, refusing to tell me anything and saying they would send a letter to my doc. They repeated all the same tests my local doc had done because my ANA, antiDS-DNA, anti-ro, etc, antibody levels were so high they thought my doc had screwed up the tests. Of course, they got the same results. After paying hundreds for the consult and labs, etc., the UAB doc sent my rheumy a one paragraph letter confirming his diagnosis and saying they did not recommend treatments unless patients were under their direct care. Nice if they had told him that in the first place. What a waste.

Bama
08-20-2006, 02:46 PM
If you go to Mayo clinic make sure you go to the one in Minnesota. I went to the one in Jacksonville and it really wasn't that big of a step up from UAB - it is just much more expensive. My current doctor said there is a big difference between the Mayo's - need to go to the original. I wanted to go to the one in Minnesota but they said they wouldn't let me make an appointment because my current diagnosis was UCTD and I wasn't life threatening. I just called up to make the appointment myself - so it may have been better to have a referral.

Sunshine101
08-21-2006, 09:57 AM
Good point Bama. I have only been to Mayo in Rochester, MN. However, I heard the one in Arizona isn't as outstanding. I was very, very impressed with my time in Minnesota. Since that time (I am stone serious here) my dad has had THREE surgeries that have literally saved his life...disected aorta, then prostate removal and then a AAA. Local doc in Nebraska said he wouldn't have survived here. Sunshine101

JenHa55
09-01-2006, 06:28 PM
Hi Angie,

My father was diagnosed with Lupus and then MS. Growing up as a teenager I felt like no other teenager I knew. My GP refused to believe anything was wrong with me, then I went for tons of tests and was told that I probably had SLE and that there was no cure and it was a devistating disease - imagine hearing that at 18 - then he told my mother to start looking after me because I probably wouldn't accomplish my dreams - big career, marriage and kids.

As you can imagine, I took what he said and went straight to someone else. I have wonderful male doctors involved in my care, so I don't totally agree with only female docs, but I do have a female GP who is fabulous now, and she officially diagnosed me with Lupus and sent me to an internal medicine doctor who said I DIDN'T have Lupus afterall.

I knew, mostly because of my Dad, that I certainly was not imagining things either - I told her to send me to my Dad's neurologist since I knew he was good - he said I DID have Lupus (you can imagine how confusing I was by this point - still being 18 years old).

Him and my new GP said that they would find me a good rheumatologist and so I was AGAIN diagnosed WITH LUPUS...

Now, I turn 30 this year, I did get married, had a short but glorious career but no, I cannot have kids - that's been brutal this year, the final "no" from every direction - they don't even adopt to "sick people" apparently. Pretty brutal - sorry, I digress... I know lots of women with kids and Lupus - that's just my story.

I sincerely, with all of my heart and soul hope you do NOT have Lupus, I hope, I hope... don't be afraid to ask for a different opinion - in order to get the diagnosis. There are other, less severe diseases out there that can make you feel like Lupus (chronic fatigue, F.M., Sjogren....) but no matter what, we all have something in common, we sure don't feel normal most of the time -

I don't know your case but I do know that 60% of Lupus patients (according to Lupus Canada) have negative blood work, and sometimes that includes me but I DO have Lupus - but I sure wish I didn't...

Take care and stay strong.