Topic: Updating Title..Many Medical Problems lately; THANK YOU FOR HELP!
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Seekhelp, ok, did it.
Randibear, you are so sweet but please do not overextend yourself! I haven't even gotten you a thank you note from the last time and I feel awful!
Stacy, yes, my husband has had Lyme, Bart, Babs, and RMSF for 11 years. He has been intermittently compliant with treatment under much duress from me.
Most recently, in the last two years, after losing his umpteenth executive position for not being able to "connect the dots," three years ago, I finally convinced him to embrace treatment full on.
He did so for two years, often begrudgingly, not always compliantly. He did finish 7 months of Rocephin but has not complied with the oral regimen he is supposed to be on now.
He is difficult to be around as he is often depressed, angry, and constantly complaining...life sucks, this isn't how life was supposed to be, no one can do anything right, yet he won't do anything to help himself and that I cannot tolerate, as I am running myself ragged to get myself, my kids, and him better.
He wanted to go visit his mother in California. What could be nicer in Jan/Feb than an all expenses paid vacation to one of the nicest, most ritzy parts of sunny California on the beach.
I begged him NOT to go when I was starting my first dose of IVIG; that were too many possible complications, etc.
No matter what I said, he booked a flight on the morning of the last day of my IVIG. He took our oldest son with him so I was left alone with our 14 year old, whom I am too sick to get up and off to school in the mornings.
I'd told him in the past, if he ever left me that sick again to go visit his mother, not to bother coming back.
This is the sickest he has ever left me, and I told him clearly several times if he followed through with leaving me like this, alone with a 14 year old, not to come back. He chose to go anyway.
I'd had complications from the IVIG all week long. There was every sign he shouldn't go. On the last day he left, I had to be admitted to the hospital to be transfused, leaving me to scramble to find someone to get my son off the bus and stay with him until about 9 pm when I was discharged.
The next day I came down with meningitis, a known possible complication of IVIG and one I had told him I was afraid of possibly getting, and suffered for four days miserably before finally succumbing to the ER and then having to be admitted for four days. I had to scramble for child care as my older son was still in California.
I got home and was still horribly ill, with the heart issues starting immediately, and in severe pain. Finally after about ten days, the visiting nurse came and called my Primary Care doc who sent me to the ER, where I was again admitted for three days, getting discharged yesterday with the diagnosis of pericarditis.
So, although he fully expected to come home in a couple of weeks, I told him he was not going to. I know this is probably more than I should share on Lymenet and some people are going to write some nasty comments about it, but it is getting exhausting getting so many questions and I just want to clear it up. It is what it is, and I'm sure I'm not the only one who has gone through a similar situation.
I don't have any answers going forward, all I know is that I am relishing the peace in my house. No longer am I hearing on a daily basis things like ``I'm sick of having a sick wife,'' ``You've been in bed or two years'', ``this isn't what I signed up for,'' ``I want my fun wife back,'' ``I have to do everything around here,'' or listen to the yelling at the kids, etc.
Meanwhile all this happens in the midst of his Lyme brain or poor prioritizing or just pure selfishness, whatever it is...but he does what he wants to do and lets important things slide, like paying the bills, or getting groceries, or getting Cody to school, giving the kids their meds, getting Cody to bed, doctor's appts, doing homework, etc....all the things I'd consider priorities.
I am very fortunate in that I have a lot of services in the home. I have Personal Care Attendants to cook and clean. I have a twenty year old son who has totally stepped up to the plate and is getting his younger brother off to school and took great care of him while I was just in the hospital.
He is doing a lot around the house, without even being asked, doing all the errands, shopping, banking, in fact things his father was letting go.
My younger son is helping out too. We all love Blake, but there is nothing that can replace having a peaceful house and not having that feeling in your chest of when is the next verbal outburst going to happen, or what disaster is going to come next because something wasn't followed through on.
I almost lost Dr. J for my kids because right after he left, they called and the kids had missed 3 appts I didn't even know about. They had left numerous messages. I picked up the phone and there were well over 200 voice mails on it. I had been so sick, again these were things he was supposed to be taking care of.
It is so much easier to just do it yourself, I am finding, then to think someone else is doing it and then deal with a huge mess when you find out they aren't.
Right now no one had medical insurance because he never filled out the redetermination form. He left it on my bureau, and told me to do it, even though I asked him several times to please sit down on the bed with me and do it with me, as I am in no condition to get up and search for bank statements, 401ks, or whatever else they might need.
So let me clear up that my husband did not walk out on us....well, he did, but in his mind it was for a temporary break/vacation.
In my mind, you don't get to do that and leave your very sick wife behind to fend for herself. Where it goes from here, I don't know. I do know he will be home in mid to late March for his SSDI hearing for about 6-8 weeks to see doctors and stuff, but I plan for him to return to California after that.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Some people you just can't fix. But over all you
still sound like you have things to be thankful
for. Hang in there Scarlett, Tomorrow's another day.
Lots of Love sent your way.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Pinelady, thank you so much. I am very positive, I feel good emotionally, and whatever comes our way, I am determined to make it the best it can be!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I just wanted to say THANK YOU for the get well cards, they have made me soooo happy and they are so beautiful!!!
Also today we received a $40 gift card to Wendy's, anonymously, which I cannot say THANK YOU enough for!!! It is really our favorite fast food restaurant, by far, and the kids were overjoyed!
I cannot tell you how grateful we are. It is so awesome to know we can get a couple of dinners without worrying about anything, that everyone will enjoy and that will be a great treat!
That was so generous and kind, to whomever sent it, THANK YOU SO MUCH!!!!!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Wow, hard to believe that since I started this thread I've had at least five more ER/hosp visits and now have blood clots in both arms, and have lost my PICC line.
I really thought I was at the end of the medical problems but I wasn't!!! I got a HUGE blood clot in my left arm from the heplock from when I was in the hospital with pericarditis; going from inner elbow almost to shoulder, and several small clots in PICC arm at the same time, oddly enough.
So there went my PICC line. I'm worried about how I'm going to get my IVIG. Now I'm on two Lovenox shots a day and 7.5 mg of Coumadin.
But, inside I feel a sense of "betterness" trying to get out and I think the one round of IVIG really helped me. It's hard to explain, but I think underneath all these collateral issues (as someone so well stated it, my side effects get side effects) the IVIG did some good, and soon I'm going to feel better.
I just need to figure out how they are going to get IVs in me...need to see a vascular surgeon as now I have blood clots in both arms, and may need a screen of some sort, maybe a chest port....I just want to get on with it already!!!
Anyway, thanks for the cards and Wendy's gift card again, I can't tell you how much this means.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Tracy, my gosh I can't believe how much you've been through! You are such a strong and amazing person. I'm really sorry about you and Blake, but it sounds like you are at peace with it and that's a good thing. My heart goes out to you and you are always in my prayers.
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Can't you just get poked every time you need the IVIG? Seems like that would be better than undergoing surgery for a port, if you aren't doing any IV abx.
Good luck!!!!!!
Posts: 4590 | From Midwest | Registered: Jun 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Hoos, I wouldn't mind that but the problems are both my arms have blood clots in them and they can't push the fluid past the clots, dislodging them.
Also, I basically have about nothing left to poke in the right arm, the veins are all trashed. The left arm is better but of course that is the arm where the HUGE clot is that goes elbow to shoulder.
The IVIG is five full days per month....I don't mind the pokes at all, or if they left a heplock in for five days. It's just that they can't infuse past the clots.
Lauren, thank you sweetie! We are all going through a lot, that's for sure...I just want to get back on the IVIG as I am holding out so much hope for it!!!!!
Oh also Hoos, I am supposed to be on IV abx....I just haven't been because I haven't been back to the doc who prescribes them and personally was thinking I'd hold off, but both my primary Lyme doc and the secondary one who gave me my PICC want me on IV abx. I was thinking the IVIG might be enough.
I need to get to these docs and see what they say and stop speculating. Need to wake up in time to make appts and get rides!!!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Okay, gotcha....hope you find a solution!!!! Good luck with your IVIG! (((hugs)))
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
As a temporary solution -- hubby has had IV's given in his feet before. It would depend on how large the needle is. This was a one-time stick in a doc's office -- did it 2 or 3 times I think.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
they had to do iv's in my mom's groin. sad to say, she was in a lot of pain with it.
i hope they get it all straightened out.
and tracy, dear, don't you ever worry about what you post here. i mean look at me, i talk about my home problems. hmm, course i did get one sort of rude private mail but hey they don't live my life either!!
so vent away girl...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Tracy, I'm so glad to hear that you are home and doing better. I hope that you start to feel better soon too!
I was also going to tell you that they can place IV's in your feet if they have to. Sounds like that may be your best, safest option for now. You would have to alternate feet every other day for the 5 days of IVIG. Not fun but at least you could get your therapy done.
Take care, big hug Posts: 5237 | From here | Registered: Nov 2007
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I have an appointmenet with a vascular surgeon on Friday, I'm so glad they got me in very quickly!
He will assess the whole situation with the blood clots, if I need a filter to keep them from going into my heart, and if a chest port is indicated or what other suggestions he has.
So I am excited to have some answers very soon!!!
Once I get the venous access figured out, I can go see my LLD and see what he needs to adjust so I can get back to the IVIG in light of having gotten the side effects and meningitis last time.
Then I can also find out if he thinks I should still pursue the IV abx if I have a line put in, or if I should wait.
So excited to have things moving again! It's been impossible with one thing after another....I finally woke up in time to make one appt! Though I did go right back to sleep and slept all day.....
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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