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My new autonomic cardiologist wants to hospitalize me for tests!!!

Gingergrrl

Senior Member
Messages
16,171
Hi @Gingergrrl

Not to be a pest but I wanted to ask you to summarize your test results so far. It's been interesting watching someone get the medical care that most pwcs would love to get BUT I was curious as to what came out of it. And would you recommend this for others ? Thanks. X

@xchocoholic I am not sure what else to add b/c I tried to summarize everything as it happened in this thread. I have not seen any copies of my test results and hope to learn more info at my follow-up appt with my cardio on Oct 10th. When he did rounds in the hospital, it was really quick so there was not a lot of time for me to ask questions.

I would say that about 3/4 of my hospital stay was to rule out other possible causes of my symptoms such as a coronary blockage or a blood clot in the lungs. All of these things were negative which is good but doesn't actually help me with my level of functional impairment. But I understand why he did it b/c my exercise EKG showed ischemia and I had such significant trouble breathing. Ischemia has now been ruled out which is a relief for me.

The most useful was the positive TTT and learning how low my BP actually drops and stays throughout the day & night. I already knew I had tachycardia so that was not new info. So I learned that I have significant autonomic dysfunction and also learned that I have low potassium and magnesium which I did not know.

My current treatment plan is to add Midodrine 2x/day with a long term goal to increase the dosage, double my Florinef, add a prescription Potassium pill, and drink Pedialyte every morning and throughout the day. Plus I continue with my other meds like Atenolol, Armour Thyroid, Famvir, etc. I tried my damnedest to get my cardio to speak with my CFS doctor but was unable to make this happen (but am not giving up!)

I know you probably didn't mean anything by this but when you said I got the medical care that most PWC's would love to get, it added to my guilt (which is my own issue that I fight daily.) I have fought and advocated for myself for two years to end up with the doctors that I have now and none of it has been easy.

I have had things blocking me at every step of the way including my former employer, disability company, insurance company, a boatload of prior horrible doctors, several horrible useless ER visits, and none of this came easy. I made it my full-time job to find a CFS specialist and we drove seven hours up to OMI (each way) to get a proper diagnosis and anti-viral.

To answer your last questions, I do think something came of my efforts but that it is a very long road to travel. Had the CTA shown a real blockage, I would have had an angiogram and surgery and gone down a different path. So, to rule things out is good. And yes, I would recommend to others with ME/CFS to never give up b/c you never know who will be the doctor or what will be the medication that finally brings you some relief.

When I have seen many others on PR travel to another country for treatment (the U.S. and Belgium), it inspired me that I can find the courage to spend five days in the hospital even though I was fearful and had some difficult moments. I hope this answered all your questions, and I don't mean to sound defensive, I just want to convey that my journey has not been easy and that I still have a long way to go. The worst part is the guilt of how my illness affects my family and those around me.
 
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Kati

Patient in training
Messages
5,497
Hi Gingergirrl

Welcome to our world. :thumbdown:

It is heartbreaking, scary, frustrating and impossible, all at once. The emotional toll is unbelievably high.
No one planned to live this 'lifestyle'. It's retched.

While we are pursueing getting answers for our symptoms, days, and then months and even years go by. most of us will not die of this disease. Answers would be nice. i am still waiting but governments are not in a hurry to give them.

This brings me to 'in the meantime'... in the meantime, life goes on. Families adjust, somehow. Friends go on living their lives, and more often than not, they drift away. The important people, if you are lucky, stay and if you are very lucky, help.

There are many of us out here who are living 'in the meantime', waiting for answers but also trying to live and enjoy life within their energy envelope. Some have a very tiny energy envelope, and some have more leeway.

I think there is lots of hope to be had for our future. Some very caring physicians and scientists are working on answers for us. It's not going to happen in 24 hours but progress is being made.

In the meantime, we live the best we can. We spend quality time with family. We rest. We feed our soul, whichever way suits us. We support our researchers. We advocate to our governments for funding and research. And hopefully, every day we can manage to be thankful for something or someone.

I know this is probably not the answer you are wishing for, but planning ahead for the long run is important, regardless of the outcome. Most of us if not all of us are still stuck with it. But the good news is that things can get better and they will. :balloons:
 
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xchocoholic

Senior Member
Messages
2,947
Location
Florida
Hi @Gingergrrl . I certainly never meant to add to your feelings of guilt. I'm genuinely happy and inspired that you've accomplished what you have.

The reason I asked if you thought these tests were productive is that once upon a time we were discussing on the dinet forum how our symptoms are always given as reasons for going to the ER or seeing your doctor asap.

I'm not in the medical field or medically trained so I don't know when to take those recommendations seriously.

My experience with learning what could be ignored was gained when my dd first started having episodes of anaphylaxis. Our instructions were to use an epi pen and go to the er.

This was happening every few days at first. Following this plan certainly wasn't feasible every time this happened. So we learned on our own that Benadryl usually took care of this.

I've never seen medical recommendations for doing what we did so it's been confusing. However I've had nurses tell me that we were doing the right thing and that medical professionals just had to say patients needed to be OVERLY cautious to cover their assess in case their patients got worse or died.

So this makes me wonder why pwcs aren't getting more tests to look for problems that we're being told are life threatening.

Does this make sense ?

Is it because they know the REAL value of these tests ? Or they somehow (magically ?) Know that pwcs physical problems won't show up on the tests available ? Or what I have been thinking since 1990, they simply don't give a rat's ass about pwcs and the sooner we die the better ?

Fwiw, you seem like a really sweet person and I'm sure your family wouldn't want you feeling guilty about your illness.

Brain dead. Lol. Gotta rest. X
 

zzz

Senior Member
Messages
675
Location
Oregon
@zzz Thank you for all the dysautonomia links and I just read through everything. It was interesting and very helpful. It talks a lot about "low plasma renin." Do you know what that means and which tests measures it?

You're welcome! Renin is a crucial part of the renin-angiotensin system, which is used to create the form of angiotensin that is used by the body. Angiotensin, as its name implies, is necessary to keep proper tension in the blood vessels, i.e., to maintain blood pressure. If you have too little angiotensin, your blood pressure will be low. And if you have low plasma renin, not enough angiotensin will be created.

Angiotensin also stimulates the secretion of the hormone aldosterone from the adrenal cortex. Aldosterone causes the tubules of the kidneys to increase the reabsorption of sodium and water into the blood. This increases the volume of fluid in the body, which also increases blood pressure.

You appear to be referring to the following quote in the material I linked to:
Florinef is a mineralocorticoid and, like beta blockers, can reduce levels of plasma renin activity (Jacob et al., 1997). Reduced levels of plasma renin activity correlate with the hypovolemia observed in some POTS patients. Florinef may be a counterproductive treatment in these patients.

So what this means is that in some people, Florinef can have side effects that end up increasing hypovolemia, which can completely cancel out its main effect of reducing hypovolemia (i.e., increasing blood volume). This clearly applies only to some people, as many people do derive benefit from Florinef. The fact that the word "counterproductive" is used (as opposed, for example, to "ineffective") implies that in some people, Florinef may not only fail to decrease hypovolemia, but may actually increase it.

As for tests, there is a simple renin blood test that can be done. If you are feeling no positive effect from the Florinef, it may be a good idea to request this test while taking the Florinef. On the other hand, if your doctor decides that the Florinef is counterproductive for you either for the above reasons or the ones below, he may just take you off it, and no test would be necessary.

Florinef and midodrine also may interact. For example, the following is from the drug interaction checker at Drugs.com:
Using fludrocortisone together with midodrine may lead to an increase in blood pressure and intraocular pressure. Glaucoma may be aggravated in some patients. Contact your doctor if you experience increased side effects or if your condition changes. You may need a dose adjustment or need your blood pressure and ocular pressure checked more often if you use both medications.

As an autonomic cardiologist, Dr. C uses both drugs frequently, and undoubtedly knows of this interaction. However, as you have seen, most doctors - even the best ones - often do not realize that our drug sensitivities mean that we may experience these interactions at far lower doses than most people. You seem to have already guessed at this interaction based on what you said about what happened when you doubled your Florinef dose. You said you were going to try skipping the Florinef for a day and see if that would help. I would think that it would. Please let us know how things are going. Good luck!
 
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Gingergrrl

Senior Member
Messages
16,171
@zzz thanks for explaining all that and I asked my CFS doctor about plasma renin test and he said this would be good. He also wants to test for vasopressin? Is this related? I apologize if I already asked you this?!!

I am pretty sure I am going to stop Florinef regardless as I have taken it since July with no benefit that I can see. My cardio had me double the dose from 1/4 to 1/2 pill (which I know is still low) but it increased the pressure in my head and I had dizziness & vertigo which was new for me.

But even with the Midodrine & Florinef together, it still did not raise my BP. I went back to 1/4 Florinef today but really think I just want to stop it and see how I react to Midodrine without it.

I have a feeling that the dysautonomia meds will take a long time to sort out and trying not to get frustrated.
 

Gingergrrl

Senior Member
Messages
16,171
@xchocoholic I think I answered your questions in your other thread re: how to determine if something is an emergency but if I didn't, please ask me again here.

Overall, for something that seems like a heart attack or anaphylaxis especially in a child, I would err on the side of caution and go to the ER.

As far as my guilt re: being sick, that is my own issue that I have to find a way to deal with and today was horrible in that regard. My illness is having a huge effect on my husband and mother and I often think they would both be better off without me and all the stress and burden I am causing them.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
....

I have a feeling that the dysautonomia meds will take a long time to sort out and trying not to get frustrated.

That is usually how it works out unless you are very lucky and strike gold quickly. Maybe 6 months to a year? But then you may hit the right combo much faster.

Sushi
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
As far as my guilt re: being sick, that is my own issue that I have to find a way to deal with and today was horrible in that regard. My illness is having a huge effect on my husband and mother and I often think they would both be better off without me and all the stress and burden I am causing them.

I know you say you have to find a way to deal with this yourself, but you come across as a very nice person, and for that reason I think that your husband and mother would consider that this greatly outweighs any problems that you feel you cause them. I can't imagine they would even think of not being there to support you. You would do the same for them, and probably already have done a lot for them.

And the illness is of course not your fault.

I know that quite a lot of people feel guilty about the burden they feel that they represent, and the fact that they can't do things with their loved ones that they could if they were well.

I guess nothing I say will make a difference. I wish it could.
 

zzz

Senior Member
Messages
675
Location
Oregon
@zzz thanks for explaining all that and I asked my CFS doctor about plasma renin test and he said this would be good. He also wants to test for vasopressin? Is this related? I apologize if I already asked you this?!!

Yes, it is related, and no, you didn't ask me already.:)

The name "vasopressin" sounds like it's describing something like "angiotensin", and sure enough, there are similarities. Both are hormones, and between the two of them, they are involved with all three organs in the HPA axis. The various forms of angiotensin are produced in the adrenals, while vasopressin is produced in the hypothalamus and stored in the pituitary gland until it is needed.

Like angiotensin (actually, the active form, which is angiotensin II), vasopressin, unsurprisingly, has an effect on maintaining blood pressure. It is vasoconstrictive, and increases arterial blood pressure. However, this effect is small in healthy people. The main time that its vasoconstrictive nature comes into play is when blood pressure drops sharply, such as the result of hemorrhaging. Vasopressin then constricts the arteries to keep blood flowing to essential organs. In contrast, angiotensin is used in more of a maintenance mode to modulate blood pressure.

Vasopressin is also known as anti-diuretic hormone (ADH), and it is this role that your doctor is most interested in. Like the hormone aldosterone, produced in the adrenals, ADH is responsible for maintaining proper blood volume. However, the two hormones do different things to accomplish this goal so that both blood volume and sodium concentration are maintained. ADH acts in the kidneys directly to retain water, and also to reabsorb urea, which leads to the reabsorption of water due to osmosis. Aldosterone acts in the kidneys to retain sodium ions, which also leads to the reabsorption of water due to osmosis. The two hormones are used in combination to maintain the stability of your blood volume and the concentration of sodium in the blood; ADH is mainly responsible for assuring that the latter task happens. If this process is not working properly and is the cause of your hypovolemia, at least part of the problem may be that your vasopressin/ADH level is too low. If it is, vasopressin can be supplemented by Desmopressin, which is an artificial hormone that has the anti-diuretic effects of vasopressin, though not the vasoconstrictive effects.
But even with the Midodrine & Florinef together, it still did not raise my BP. I went back to 1/4 Florinef today but really think I just want to stop it and see how I react to Midodrine without it.

As I mentioned in the first paragraph of my previous post, if the Florinef is reducing your renin levels, this may result in a lowering of your blood pressure, thereby causing the Florinef to work against the midodrine. This is likely one reason why your doctor wants your renin levels tested.

Of course, later in the same post I quoted a drug interaction where the simultaneous use of Florinef and midodrine may increase blood pressure. These seemingly contradictory statements are not uncommon with drugs, which often can have opposite side effects in different people.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Hi @Gingergrrl.

I totally agree with @MeSci about how your family feels about your worth. But I understand the guilt and loss of self worth too.

My income was needed to help pay our bills but I was too sick to work. Disability or chronic illness wasn't something I was familiar with. And doctors turned psycho all of the sudden.

Somewhere along the way before the web I'm sure a therapist helped me see that people can be valuable emotionally to others even if they're ill. I was too busy beating myself up to figure this out on my own.

About ignoring life threatening symptoms, I appreciate all the feedback I've gotten. Thanks. It's re-assuring to know I'm not alone. But I'm just wondering if there's something missing. As in can doctors recognize a life threatening condition before it becomes acute.

Gotta rest. Tc .. x
 

JAM

Jill
Messages
421
@xchocoholic As far as my guilt re: being sick, that is my own issue that I have to find a way to deal with and today was horrible in that regard. My illness is having a huge effect on my husband and mother and I often think they would both be better off without me and all the stress and burden I am causing them.
Just wanted to say that you are not alone in this feeling. <3 Hopefully you will figure it all out and be functioning again soon. Until then maybe try to soak up the love and care they are giving you. It is hard to be cared for, but it seems only natural that we see both sides of the caregiving coin, right?
 

Gingergrrl

Senior Member
Messages
16,171
@zzz

Yes, it is related, and no, you didn't ask me already.:)

That's good b/c sometimes I cannot remember what I've already asked and then when I go back to the board, I sometimes can't remember which post contained the answer that I needed!

Thank you for explaining about vasopressin and I wish I had a science background so I could fully take in everything that you explain to me. I am going to be tested for Vasopressin and plasma renin whenever I do my next blood tests for OMI.

As I mentioned in the first paragraph of my previous post, if the Florinef is reducing your renin levels, this may result in a lowering of your blood pressure, thereby causing the Florinef to work against the midodrine. This is likely one reason why your doctor wants your renin levels tested.

I actually stopped taking the Florinef as of yesterday on my own (but told my doctor about it.) It was actually prescribed by my former cardio and in the three months that I took it (which I feel is a fair trial) I never felt any benefit. It gave me headaches and pressure in my head and I tried all combinations and dosing (Mon, Weds, Fri schedule, 1/4 pill, 1/2 pill, alternating, etc.) I actually feel more benefit from low dose Midodrine in less than one week than in three months of Florinef.

Of course, later in the same post I quoted a drug interaction where the simultaneous use of Florinef and midodrine may increase blood pressure. These seemingly contradictory statements are not uncommon with drugs, which often can have opposite side effects in different people.

So far, I have not had much of an increase in BP. The low BP's in the hospital 80's/50's are gone and I am maintaining 90's/60's with a handful of readings where the top number reached between 100 and 106. So, I guess there is a slight improvement. My shortness of breath varies greatly and too early to say how much Midodrine is affecting it yet. I had a few days of feeling chills, feverish (but no fever) and a sickly feeling but today it was gone so I think it was random versus due to the Midodrine.

Thanks again!
 

Gingergrrl

Senior Member
Messages
16,171
@MeSci @xchocoholic and @JAM Thank you for all your kind words re: coping with guilt and this is probably the single most difficult part of being ill. I don't doubt that I am a good person and did not get ill on purpose. But it does not make it any easier when I see how much my illness has affected my family, especially my husband.

His late wife died of a rare cancer at age 39 and when he met me, I was totally healthy. I was thrilled to be a co-parent to his daughter (my step-daughter) and we had plans for everything that we would do together (not just career and financial but travel and fun things.) Instead, I have been sick literally our entire two year marriage and have not been able to be the parent that I'd planned to be.

Instead, my husband is taking care of me and he has already dealt with losing a wife to illness. So I have this extra guilt that I am putting him through hell and I have an illness where it is not fatal but I really do not get that much better and cannot do any of the things we planned. He is incredibly loyal and would never leave me but I don't know why he or my step-daughter have to go through this.

I had so many years of being single (yet was totally healthy that entire time) and wishing I had a partner to share my life with. Now I have one but I am literally too sick to do the most basic things. I know there is still hope that I can get better but I often lose sight of that and become hopeless and feel like he would be better off without me. The thought makes me totally heartbroken, but I often think that he still has time to find someone out there who is healthy and can do fun things with him again.

ETA: I know this is getting off topic from the original thread about my new cardio wanting to hospitalize me but hopefully since I started the thread, it is okay? :D
 

zzz

Senior Member
Messages
675
Location
Oregon
I know this is getting off topic from the original thread about my new cardio wanting to hospitalize me but hopefully since I started the thread, it is okay? :D

Absolutely. It's all interconnected, anyway.
@MeSci @xchocoholic and @JAM Thank you for all your kind words re: coping with guilt and this is probably the single most difficult part of being ill.

This is often the case with emotional issues. They can cause so much suffering! But fortunately, these are much better understood than our physical illness, and many ways of working with them successfully have been developed.

So let me see if I can be at least somewhat helpful here.

As Yogi Berra once said, "It's tough to make predictions, especially about the future." Yet when we plan for the future, which we do all the time, we implicitly make predictions about it. Or we just outright make predictions: "This illness is never going to get better." "I will just be a burden to others for the rest of my life." "I will never be happy." These are just a few of the more common predictions PWME make on a routine basis.

Yet if we look at our past, we've been making predictions all our life. How many of them have come true, especially in the way we intended? If we're honest, we see that it's an extremely small number. In fact, if we look at our past history, our predictions about the future often end up being no more valid than random guesses. This is true even when our predictions seem to be "safe".

There's an old Chinese fable that illustrates this:

A farmer was working in his field, when his teenaged son rode up to him on a horse that the farmer had never seen before. The horse was beautiful and appeared to be in perfect health. "Look, father!" said the boy. "I just found this wild horse, and he likes me, and now he's mine!"

The farmer replied, "Could be good, could be bad," and went back to his work.

A while later, the boy ran to the farmer in tears, saying, "My new horse has run away, and I have looked all over, and I cannot find him anywhere!"

The farmer merely replied, "Could be good, could be bad," and went back to his work.

A little while later, a number of horses showed up on the farm, including the original one.

"Look, father!" the boy cried. "My horse just went to get all his friends! Now all these horses are ours!"

The farmer merely replied, "Could be good, could be bad," and went back to his work.

The boy started riding around the farm on his favorite horse. After a while, his father heard him call out, "Help me, father! Help me!" The farmer rushed over to the boy, who had fallen off his horse. "I have broken my leg!", the boy exclaimed. The farmer examined the leg and found that indeed, the son had broken it. "Could be good, could be bad," he said, and he went to the house to get some materials to bandage up the leg.

While he was bandaging the leg, a group of soldiers from the emperor's army rode up. "A war is about to start, said the lead soldier. "We have orders to round up all able-bodied young men and conscript them into the army. Are there any able bodied young men here?"

"No," said the farmer. "There is just my son, and as you can clearly see, his leg is broken."​

The soldiers went on their way.​

@Gingergrrl, in the case of your husband, there are many possibilities here. Of course, everyone wants a mate who is perfect in every way, including health. But assume for a moment that you didn't get sick. Your husband sounds like a very good man, and to be married to you, I'm sure he must be. So it is only natural that in his situation with his late wife, he would have some unresolved guilt feelings. Did he really do enough for her? Did he do everything he could to save her life? And if that weren't possible, did he do everything he possible could for her to make the remainder of her life as good as it could have possibly have been?

You know how guilt works. So you know that in retrospect, the mind will always come up with things that could have been done better, that might have made a difference. This isn't a rational process; it might not even be conscious. But for someone like your husband, in his situation, it is very common.

Now you come along, and on the surface, it's just perfect. Finally, a healthy partner, someone he can fully share his life with! Then you get sick, and it seems like the repeat of a nightmare.

But is it really? These things are always much more complex than they seem at first glance. If you had had this ideal, perfect marriage with your husband, what would have happened to his survivor's guilt, which is usually present in such a situation? It may have faded with time, or not; it's certainly impossible for me to say. But your illness is certainly giving him a chance to work out unresolved issues from his late wife's illness. On one hand, there are all the difficulties involved in taking care of you; these are the most obvious. And they may also trigger memories that he'd rather not deal with. But if you do your best and are there for him as much as you can be, it may actually help him work through unresolved issues dealing with his late wife's illness that would otherwise not have been resolved. And when you do recover (and that's a when, not an if), that will help complete a lot of healing issues for him.

Contrast this with what would happen if you were to suddenly disappear from his life. Not only would he be devastated for all the usual reasons, but on a very deep (and possibly subconscious) level, he would see the pattern that women he married always got sick and left him. You could explain to him all you want that you were doing this for his own good and it would make no difference whatsoever; it's not a rational thing. He would just know (possibly without even realizing it) that his relationships with women were doomed. He might either avoid future relationships, or if this knowledge were suppressed, enter into some but unconsciously sabotage them before they got serious.

Now I started this post with a warning about predictions, and here I am, making lots of predictions, many about your husband, whom I've never even met. So obviously, all of this should be taken with a grain of salt (or two or three). But my point here is that the outcomes I've described are at least as likely, if not more so, than the ones you have been thinking about. This is why the traditional marriage vows encompass all possibilities - good and bad. The marriage you and your husband have is not the one either of you had in mind when you got married, but it's the one you have. The important thing is that you both love each other, and in this you are very fortunate in that such a situation is by no means a given in marriage. If you simply work at being as good a wife and mother as you can be under the circumstances, that will be plenty. Guilt comes from answers to the irrelevant question of "What if?", which deals with nonexistent realities. If you simply deal with what is, and keep your focus in the present, guilt will have no opportunity to arise. Nor should it; there is absolutely no reason for you to feel guilty here.

(BTW one of the reasons I made such a strong statement about recovery is that my own recovery is continuing very well; I will share the details with you later.)
 
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xchocoholic

Senior Member
Messages
2,947
Location
Florida
Hi @Gingergrrl I guess it would've helped if I'd said that I always thought you were going to get better. I have a habit of thinking things but not saying it out loud. Lol.

Just from what I've seen you're doing everything a pwc should do to get answers and proper treatment. And you're giving the rest of us guidance on what to look for. Others here that are pursuing answers are helping too. Thanks.

The biggest part of my optomistic thinking, perhaps overly optomistic, comes from experience with people who've changed their diets, mostly celiacs, and recovered so much.

Many people have been near death, their words, before getting a proper dx and soon after going gf start feeling better. Some take longer and of course some only recover partially. Some people just need to do more ( eliminate other intolerances, take probiotics, treat sibo, etc) to feel better. Others, like me, do more but never fully recover.

Sorry for the book. I'm assuming this is what your family is thinking.

Tc .. x

Eta. I just shortened this. Evidently I'm chatty in the morning. Lol.
 
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Gingergrrl

Senior Member
Messages
16,171
@zzz

This is often the case with emotional issues. They can cause so much suffering! But fortunately, these are much better understood than our physical illness, and many ways of working with them successfully have been developed. So let me see if I can be at least somewhat helpful here.

Thank you and you were very helpful and I really appreciate it and I liked the Chinese fable that you referred to.

You know how guilt works. So you know that in retrospect, the mind will always come up with things that could have been done better, that might have made a difference. This isn't a rational process; it might not even be conscious.

I know a lot of my guilt is unrealistic and not my fault but nevertheless, it is still there and often very intense. I think of many things in which I could have made a different choice and maybe would not have ended up getting mono/EBV and therefore CFS. I believe (and so does my CFS specialist) that the final trigger was a minor surgery with anesthesia which in retrospect, I wish I did not have. Of course there is no guarantee of this but my mind goes through it all the time.

And when you do recover (and that's a when, not an if), that will help complete a lot of healing issues for him.

It is so kind of you to say that, and I know you mean it, but when I look at all of the amazingly kind and beautiful people on this board who have not recovered, I think why would I be different? There is no cure for ME/CFS and I was sick a year ago and thought I would be better but now another year later, I am even more sick. Almost every day my parents ask me if I am better and I want to be able to tell them yes and really mean it but it seems unlikely.

Contrast this with what would happen if you were to suddenly disappear from his life.

I can't do that because this brings even more guilt. He moved across the country to be with me and was so angry with me the last time I said I would leave so he could have a better life that I promised I would never say it again. But I offer it sometimes when I am really feeling sick b/c I feel that I have nothing else to offer.

The marriage you and your husband have is not the one either of you had in mind when you got married, but it's the one you have. The important thing is that you both love each other, and in this you are very fortunate in that such a situation is by no means a given in marriage.

Thank you and that is very true.

If you simply work at being as good a wife and mother as you can be under the circumstances, that will be plenty. Guilt comes from answers to the irrelevant question of "What if?", which deals with nonexistent realities. If you simply deal with what is, and keep your focus in the present, guilt will have no opportunity to arise. Nor should it; there is absolutely no reason for you to feel guilty here.

Thank you again and it is so very difficult for me to stay in the present moment and I constantly think of all the "what if" questions from the past and future.

(BTW one of the reasons I made such a strong statement about recovery is that my own recovery is continuing very well; I will share the details with you later.)

That is wonderful and I want to hear more about this! I have not yet ordered the Goldstein books but plan to do so and want to hear more about the things that have made the biggest difference for you. Thanks again for all your support.
 

Gingergrrl

Senior Member
Messages
16,171
@xchocoholic

I guess it would've helped if I'd said that I always thought you were going to get better. I have a habit of thinking things but not saying it out loud. Lol. Just from what I've seen you're doing everything a pwc should do to get answers and proper treatment. And you're giving the rest of us guidance on what to look for. Others here that are pursuing answers are helping too. Thanks.

Thanks and I really hope that sharing all my tests and experiences will help someone down the line. When I think of it that way, it makes me feel a lot better.

The biggest part of my optomistic thinking, perhaps overly optomistic, comes from experience with people who've changed their diets, mostly celiacs, and recovered so much.

I do not have celiac but have not eaten gluten in ten months and will never eat it again due to Hashimoto's Disease.

Sorry for the book. I'm assuming this is what your family is thinking. Eta. I just shortened this. Evidently I'm chatty in the morning. Lol.

Not sure what you wrote but you didn't need to shorten it! I really enjoy everything that everyone writes to me and read it all. I appreciate all of your feedback and support.
 

JAM

Jill
Messages
421
@MeSci

I had so many years of being single (yet was totally healthy that entire time) and wishing I had a partner to share my life with. Now I have one but I am literally too sick to do the most basic things. I know there is still hope that I can get better but I often lose sight of that and become hopeless and feel like he would be better off without me. The thought makes me totally heartbroken, but I often think that he still has time to find someone out there who is healthy and can do fun things with him again.

It is hard. Sometimes I say that it sucks to have everything you want and not be able to enjoy it. The guilt can be overwhelming, your husband's previous experience must only exacerbate that feeling. Hugs.
 

Gingergrrl

Senior Member
Messages
16,171
To backtrack to the original purpose of my thread (my new cardio hospitalizing me) I just got a bunch of statements from my insurance (Blue Shield) saying that they are only paying for the first day of the hospitalization (I was there for five days) and they are still not paying for the CTA (CT angiogram) that my cardio ordered b/c they still say it was medically not necessary even though the head of the cardiology dept at the hospital (my cardio) says it was!!!

To top it off, as of today, I no longer even have this insurance and now have an Obamacare plan through Covered CA. I don't have the energy to contact BS or file an appeal or whatever will be needed and they have not yet actually sent me any bills. I see my cardio on Oct 10th and will discuss it with him. He did what he felt was needed and I do not blame him in any way. It is just so annoying to have to deal with this now.