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Discouraged and venting


goldicedance
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I know many of you think my posts are irritating. But, I think I am getting really down about POTS as well as cancer. I keep reading these posts and find that we are all looking for the magic pill or potion that will make us all feel better. It just isn't there? We all know that we are taking a coctail full of drugs to keep us functioning and that sometimes our "tastes change" so we must change the ingredients. There is no magic bullet. While Dr. Grubb is certainly an expert, he doesn't seem able (because of his health and time constraints) able to serve as a primary doctor to patients once they go home. I also think that from reading these posts as well as medical studies and reports on the web that we probably know as much, or more, than our doctors. We must constantly inform our doctors about studies that have come out on POTS -- mestinon, use of ritalin, anti-depressants, etc. to keep them informed. You can imagine that your doctor sees many patients in their specialities and, frankly, POTS is not one of the areas for which they see more than a few patients. For example, at Georgetown University, there is no dysautonomia specialist. I don't think there are any at George Washington or other hospitals.

I also think that we should all focus on the big picture. We need to realize that there will be a lot of bumps in the road. I join others in their views of pulse watch monitors...I think they would make us too anxious when we see blips and that our bodies should be our guides. On the other hand, wear a pulse watch in the beginning of one's jouney down the POTS road is probably not so bad because it gives one a sense of knowing what my trigger tachycardia, including not only POTS but also stress. I am sure many of us know our heart rate increases during periods of stress.

I am so sorry for this post but I feel like I need to vent. Dealing with POTs and breast cancer has made me feel overwhelmed. If you think living with POTs is bad, try living with POTS and cancer--a double whammy. Don't sweat the small stuff--stop and smell the roses . Feel relieved that POTS is not a life threatening disease.

Oh well, sorry for this vent...I feel much better now. NOT!

Lois

PS My oncologist says ritatin is good for chemo brain fog. So I am now back on it and do think it is doing some good.

PS2 I am finishing this post with tears in my eyes. I want to meet all of you and give you hugs and kisses for being there for me.

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Lois,

First, I don't find anyone's posts "irritating". This is a place to vent as often as needed. My heart goes out to you for dealing with two major diagnoses at once. There was a period of time when my doctors thought I had colon cancer in my twenties and I remember how terrifying just the idea of cancer can be. You have the diagnosis and now receiving treatment for the very thing so many women fear- breast cancer. There is no upside to this- it's bad. But.... cancer is not the same as it used to be. Yet, for you that doesn't really matter because that doesn't change the effect it is having on your life right now. Unfortunately, you are not alone. Have you considered linking up with a local support group for breast cancer patients? Of course, DINET is here for you as a means of suppot, too. I'm sending love and good thoughts your way. Don't apologize for legitimate feelings. You have the right to be ticked off and scared. Life can be cruel but you don't have to go through this alone.

Much love,

Carmen

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:D Hi Lois - I don't think your posts are irritating at all - I volunteer one day a week for a few hours on an oncology floor at a local hospital and I think of you, believe it or not, often - POTS, though uncomfortable and life changing, is not terminal and by being on the oncology floor once a week for the past 2 1/2 years, helping those who are far less fortunate than I, it keeps what I have in perspective, no matter what complications arise from my POTS and CFS and lately, there have been many. Yet as crappy as I feel some days, I make sure to drag myself to help give an encouraging word, a smile or a small trinket from the humor basket I keep with me on the floor. You are an inspiration to me and I hope you recover soon from the trials and tribulations you are facing with cancer - You are stronger than you think!! Also, best wishes for a happy and most important, HEALTHY New Year!!! Love, Beth
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Lois, I have never found your postings irritating and in fact have missed hearing from you.

I am so sorry you are going through such a rough time. I can't imagine. No one can, unless they are where you are.

I agree with you 100% about the big picture. People are still bugging me to go to the specialists. Spend 1000's to hear what I've already learned for myself. This is a disease that has a long way to go before there are great strides in it. I think at this point I take my bp about once a week. I go totally by how I'm feeling, not what things are saying. My recent hospital stay went exactly as I expected, including having a shrink say I was a nutball with issues. There has to come a point where we realize that for some of us, this is as good as it's going to get and deal with it. I speak with the perspective of an older person who's kids are grown and has 3 grandkids. But my point is, I'm at a stage where I realize this is the best I can do and that's just okay with me. I was sick my whole life, poor my whole life, worked my whole life, and now am pretty darned disabled for the rest of my life. I'm not looking for the magic pill, because I for one don't believe there is one. But I would never presume to take that away from anyone else. (the opinions expressed here do not neccessarily(sp) go along with anyone else's)

However, regarding your cancer, I have a great deal of hope for you. This is something that can be seen, is known as real, and has many treatments and a pretty darn high cure rate any more. I don't know where you are in your treatment Lois, or if it was in your lymph nodes, but as a nurse for a long time, I know the treatments are so barbaric, but the end results so promising, that I can't help but truly believe you'll get through this with flying colors. I know for sure the POTS doesn't help in any way, shape, or form, and I am so sad you have to deal with both. I am sure one aggravates the other.

I am holding you in my heart and putting out positive waves for you. If you are too discouraged right now to feel positive, then let us feel it for you and let the love from all of us flow right through you. Physically, it may not help, but maybe emotionally you may feel it. We all care very much about you, you are a part of the family and we are here for you, always! muchlovetoyoumorgan

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Lois, I'm sorry you are feeling so frustrated right now, and you have every right to vent. I will keep you in my thoughts and prayers as for your breast cancer situation. I can't begin to imagine how frightened you are and how rough the treatments are. I think the people here on the board will be strong for you as you go through this. Vent away, and I'll think positive thoughts for you that you are going to beat the cancer. Keep us posted.

Melly

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Goldicedance,

I wish I could be there to give you a big hug. POTS is bad enough to handle---I can't imagine dealing with Cancer on top of the POTS. I had a friend who had breast cancer and she went through a lot, so I know it must be twice as bad for you because you were already sick.

I know that there have been huge advances in controlling breast cancer----and the survival rate is very good these days. I know my friend survived!

We are here to support you no matter what your diagnosis. This is a place to support everyone---and a lot of us have other health issues along with our POTS.

Yes, it can be very depressing due the lack of knowledge in the medical community on POTS. This is still something I have trouble understanding. I still continue to fight this ignorance----and educate. I figure I can only try. If the physician does not want to pick up on it---then they will have to live with that ignorance---- and they will miss out on a very interesting subject. The ANS has a very very important roll in our survival----and I can't imagine a physician not wanting to take part in helping us find the answers behind this puzzling disorder---that takes us down so many avenues.

I find it so hard to believe there isn't more known about dysautonomia considering all the ways this disorder can disable a person, and how many body systems it can affect. It's a shame the patients have to be the educators--------this should be a subject by itself in medical school.

I am praying that everything will come out well for you. You are a strong person and you will make it through this.

>BIG HUGS TO YOU<

Julie :0)

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nope, I don't find the posts irritating. You're just saying it like it is from your perspective--and if it's not that good for you right now, than why would that be irritating? It just is. Reality isn't always fun, but even so, I'm glad your still around here to fight the fight, and hopefully come out on the other end of this battle without any cancer. Yeah, the POTS will probably still be there and will give you it's fair share of hurdles, but I hope you can find the joy in having the days ahead to be with those who love you and who you love back.

nina

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Lois,

I'm with you. I know you'll come through this with flying colors.

I was diagnosed with thyroid cancer when I was 20 years old. I am 54 years old now. I, too, was told back then that I would never be cured, that it could come back at any time, so I know what it is like to have that hanging over my head. It had come back once.

But, you adjust. After a while, you just move on and live the best way you can.

And know that together with your family and people on this board, we are there for you when you need it. Hugs your way :D

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Lois--thanks for sharing your thoughts. I think it sums up well the current circumstances for POTS patients. That is one reason why this board can be such a "life-line" for many of us. You are right that we can be very very thankful that POTS is not life-threatening. I am so sorry you are struggling now with both POTS and cancer. I believe you will get through the latter with flying colors--as others have said--as there are very effective treatments out there now. Still, it is so hard what you are going through, amde all the harder with POTS--and I admire your strength.

Katherine

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Please don't think you are irritating to us. We are here for each other and want to help and support you.

I don't know what it's like being in your shoes but I can imagine, and what I imagine doesn't look very pretty. I think I would be terrified if I was in your shoes. You do have a double whammy to deal with and it isn't fair.

You need to, and have every right, to give your feelings a voice...that's really the healthiest way rather than stuffing them.

I feel at a loss for words but please know I'm thinking of you and wishing you full and complete recovery.

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lois -

first, i have NEVER thought that your posts are irritating!

second, vent away. we all do are share & you have more than plenty to vent about these days...in fact, you get to vent AT LEAST double your normal share, k?

i don't have any grand wisdom to add but just wanted to send you some extra (((HUGS))).

keep on keepin on....

:) melissa

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Lois,

I can't imagine having to deal with POTS and breast cancer. You are a real trooper and I wish I could meet you in person to give you a great big hug. Feel free to vent anytime. I'll keep you in my thoughts and pray that your body finds the strength to heal and that you keep your courage and determination to find something positive in each day. I know some days must seem overwhelming, but just know we are here for you anytime you need to let your frustations out or just need a cyber hug. :)

My best to you,

Gena

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Thanks, everyone, for allowing me to vent, gripe, and agonize. This week has been terrible. Imagine being nausious for 6 days and counting and nothing helps (not even Zofram, compazine, ginger, tea). I think I'll try Emend next time.

Anyway, as I was reading and then reflecting on your posts, tears ran down my cheeks. I am really blessed to have such wondeful people I can call my friends.

Lois

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Lois,

I stopped reading when I read the first line of your post. You're absolutely not irritating. I've never thought that. Please don't think that again.

Well, now that this is said, I'm going to read the rest of it!!!!

Warm wishes,

Corina :)

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Lois,

I am so sorry to hear of your struggles with breast cancer....we none can imagine what it is like to be in your shoes....you are in your own personal journey and it must be such a climb.

I wish you the best and I can't imagine why you thought your posts are irritating.

I don't know you but am sending positive thoughts and prayers to you as you continue this challenge. I hope you find something to ease the symptoms and keep us posted as you see fit.

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