Before anything else is said I want to make it EXTREMELY clear I am not suicidal. I want to live. There are some parts of my life that are very difficult, and which make it hard to live a full life, but overall I’d call my life pretty good. I have some very awesome parts in my life as well, and most of it is just… normal. I do get caught up in all the health stuff all too often, but it also takes up a huge amount of my energy. I have love and goals and dreams and friends and a lot of wonderful parts of my life. I also promised E he’s stuck with me for the rest of his life, and haunting him (lol) doesn’t seem quite like I’d be sticking to that promise! I want to grow old with him, and I want to be a part of Gamer and Duckling’s lives, and watch them graduate, and have a bio kid (though more and more I’m wondering about that…) and so many other things!
However, I’m also wondering more and more how much longer my body can make it. I have multiple chronic illnesses, and right now they are doing tests that will likely diagnose me with another one, and not only will it be another chronic illness, but it’s likely to be another serious one.
My pancreas seems to be the problem. I don’t know for sure yet, but that’s what the doctor is looking into, and I’ve been discussing things with a friend who has autoimmune pancreatitis (I linked to chronic pancreatitis, but my understanding is it’s about the same thing, just that autoimmune pancreatitis has autoimmune factors as well) and has told me (after hearing/reading my symptoms) that my flares and day to day stuff sound like what she deals with. She’s given me some suggestions on foods to eat, and to avoid, and confirmed my suspicion that it was meat causing the biggest issue, but has taken it a step further and told me it’s likely protein, which, looking back and also looking at the flare I’m in right now, makes perfect sense. I haven’t had a lot of meat recently, I more or less cut it out of my diet when I got so sick in late August and through Sept. but I have been eating A LOT of protein containing foods – especially eggs (which are unusual for me) and peanut butter (which I love)! It also explains why the Ensure Plus makes me ill and gives me heartburn.. there is more protein in there… and actually it’s quite a bit per bottle compared with my normal diet. :/
On top of that they still have no idea what’s going on with my heart. I’m not sure if I’ve mentioned this, or how much, but my heart races for no apparent reason. My blood pressure is in normal ranges, so that’s good at least, but my heart just races and races most of the time. They’ve done a few different tests that “should” have shown the reason for this, and so far they haven’t found any answer. The only thing that is obviously wrong with my heart is a very mild murmur, which should not be causing any issues at all, and seems to be unrelated to the fast paced heart.
And of course I have lupus, which I am treating, but I really don’t think the treatment I’m on is enough, while I understand the reluctance to treat it more aggressively at this point because it’s not severe, my quality of life is seriously impacted by what is going on with it day to day, and while I can be more active when I take my meds than when we’ve tried cutting the dose, I still have struggles day to day with it. I’m not asking for or expecting a cure or to never have bad days, but it would be nice to have a day or two at least once a month where I’m not dealing with it… and I’m lucky to get that every 6 months, even if I isolate myself, and avoid the sun and take perfect care of myself. It’s getting extremely frustrating.
I also have (as mentioned above) other chronic health issues, and between all of it I’m just worn out. Tired and unsure how much longer it’s possible to deal with this, and not sure how much longer my body will function. Some would say I’m overreacting, but honestly, it’s been a scary year, and I have survived, but… not without A LOT of wear and tear on my body and more than a few issues. I just really am not sure how much longer my body can handle all of the physical strain it’s under… and that thought horrifies and upsets me immensely.
November 19, 2009
How much longer can I survive?
Posted by autoimmunelife under Uncategorized | Tags: endo, Endometriosis, IC, kids, lupus, mysterious stomach issue, pain, raynaud's, spouse, stepkids |[4] Comments
November 19, 2009 at 10:08 pm
J,
I am so sorry you have so much on your plate. I know from what you’ve said here combined with discussions we’ve had elsewhere that you have an overwhelming number of challenges all hitting you at once. I’m sorry!
As far as the big picture (and long-term) is concerned, I can understand why you have the concerns that you do. I have lived with chronic illness/chronic pain for 27 of my 40 years and I have certainly grappled with such fears myself over the years. Who wouldn’t have some worries like this with so many different serious illnesses affecting them?
I now have 17 diagnoses. I always worry that that last statement will make it sound like I’m a hypochondriac — but that is truly how many diagnoses I now have. As you are well aware, many autoimmune illnesses are associated with other ones. So, often the same patient will have numerous autoimmune illnesses.
It’s scary and stressful. However, it’s important not to get too caught up in the fear and the worry. Focusing on those things only seems to make matters worse for me. That doesn’t mean you are not entitled to your feelings! Also, it’s good that you are letting it out rather than bottling it up.
The thing is that it IS possible to strike a balance (not always perfect!!) and find ways to maximize quality of life DESPITE having numerous severe chronic illnesses.
Is my life what I pictured it would be years ago? No. Are there times I feel despair? Yes. Are there things I would like to improve? Yes.
The thing is that you are very strong, you have a strong network of online friends, you have a husband you speak lovingly of… You will get through all of this.
Are there going to be times you revisit the feelings you have now? Unfortunately, you probably will have such times. However, you have coping mechanisms and skills to get you through it.
I am sending positive energy your way! Please keep your activities to a bare minimum at this time to conserve your energy. Your body has recently been through a great deal and it sounds like all of the stress is (understandably) not doing your emotional well-being any favors either.
I know it’s hard. I know it hurts. Please practice whatever self-care measures will help you through this tough time. Hang in there!
Jeanne
November 19, 2009 at 10:20 pm
J,
I forgot to mention that the tachycardia you described seems to happen to many endo patients I’ve spoken with.
I don’t know what testing they’ve already done for that but I do know that of all the posts I’ve ever written, my dysautonomia series gets some of the most traffic to this day (and those posts are old)!
My experience this past summer with what was believed to be POTS (postural orthostatic tachycardia syndrome), a form of dysautonomia, was scary.
While blood pressure fluctuations were an issue in my case and are not for you, I have spoken with many endo patients with all sorts of unusual symptoms that tend to fall under the general umbrella of dysautonomia.
Perhaps there is more testing that they did not yet do that could pinpoint what’s happening.
I know a woman in my local endo group had some sort of ventricular condition with an acronym I can’t remember at the moment. It caused her heart to race.
Another avenue to investigate is whether any of your meds could cause tachycardia. Sometimes it’s easier/faster to pick the brain of a trusted pharmacist on such questions. It’s worth looking into as a possibility (that it could be a drug side effect).
Also, it’s possible that your blood pressure was measured at “normal times” and that it’s not “normal” other times.
Hang in there…
Feel better!
Jeanne
I will have to go read those posts again. They’ve done EKGs, an ECG, blood work, and some other scans (CT Scan?) …
This happens whether I’m on meds or not… so it doesn’t seem to be med related.
As far as the blood pressure, my husband checks it at unusual times because he’s a CNA and has all the gear, so we monitor it from time to time. I was having blood pressure fluctuations at one point, and I haven’t had any of the feelings that happen with them in over 8 months. My blood pressure seems to have normalized once the lupus med got into my system fully, and it’s since gone back to my normal numbers.
Thanks for the info!!
I hope you feel better soon also!
November 20, 2009 at 5:18 am
(((hugs)))
((hugs)) to you as well! Thanks Yaya!
November 21, 2009 at 2:45 pm
You iz not going anywherez. You iz stuck with me.
Ok, more serious now. I really hope the drs can start giving you answers and tips to be more effective in dealing with your AI issues. Hang in there, you’re doing great *hugs*
I not wantz to go anywherez.
Me too! I’m trying to hang in here, but right now it’s getting kind of rough… though I know from experience that once I can get some Ensure that won’t make me sick like the kind in the fridge does (because it’s plus, so it has extra protein) I’ll mend up fast… the last time this happened is when E first bought reg. Ensure for me, and once I started using that as my main foodsource I was up moving around again quickly (had strength again) and I wasn’t getting so sick from eating anymore, plus I wasn’t putting stuff into my body other than it, so I pulled out of the flare. I hadn’t even thought about that until my friend mentioned drinking boost during her flares…
((hugs))