Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I was released on Saturday from my longest hospitalization ever. I spent seven nights in the hospital with a pretty serious exacerbation of Myasthenia Gravis. That is an autoimmune disease which was caused from having long term bacterial infections, Lyme and company.
I had missed some IVIG treatments over the last two months and it resulted in me being extremely weak and my breathing compromised. My pulmonary function test was so bad at times my breathing wouldn't even register on the machine, and they tried to pin a COPD diagnosis on me.
I'm home now, though they tried to send me to inpatient rehab. My home nurse came yesterday and said she can still work on inpatient rehab but I declined.
I feel a lot better physically but came home to devastating news so I have done nothing but cry hysterically since I got home.
My son, who has been in remission for just barely one year from both congenital and chronic lyme, joined the Army National Guard without my knowledge and is leaving a week from today. I won't see him for 8 months and he won't even be able to call home for the first ten weeks.
I am so beyond devastated I can't talk about it. I haven't even told my family because I can't bear to hear any of the crap I will hear like "it's good for him," "he's a man now," "you have to let go sometime" or any of that crap.
So please no one here say that either. I haven't even disclosed it on my Facebook page and I'm not ready to.
Aside from simply being heartbroken, I have no time to prepare, do anything, even get some needed things in order. I will be worried sick about his health status as I not certain he is boot camp ready. He is also one of my primary caretakers and one of my PCAs and I dont' even have time to replace him, not to mention I don't even feel safe without him.
My husband is cognitively impaired from Lyme and without Ryan I can't even imagine this house getting by. I don't know how i will live with the anguish of him being gone. I know I'm an overprotective mother but I'm EXTREMELY close to my children, and I can't stand to be away from them.
I am destroyed by this news. He leaves the day after my 50th birthday; one week from today. I am in shock.
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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I am so happy that you are finally home from hospital but so sad that you are so upset. I would be the same way you are without my girls. Even though they do not live with me I know they are a call away.
I will surely not say you need to let him go since I am the same as you are.
God bless and know I am thinking and praying for you and your family. I cannot imagine having the entire family with lyme. Much love and hugs. Ann
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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posted
I am so sorry Tracy. I'll be praying for his safety and health.
Mary
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Prayers for you Tracy and prayers for Ryan.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
I will pray for you and your family, Tracy.
Helene
Posts: 140 | From Illinois | Registered: Jul 2009
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payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
tracy, we may think things are falling apart.
GOD, knows they are falling in place.
Asking The Lord's Will be in your heart and The Spirit in your body, for all things in our mind should be for His Will, He is to be happy with you and provide a safe harbor.. Tracy, Rest your brian, and your body will follow, I hope you know we all feel deeply moved by your endurance with the hospital. May you find a new day when you awake. we struggle with you,as one, I ask for healing and courage for you, Blessings to your loved ones, wayne
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Tracy, I'm so sorry your world has been crushed. I don't know what to say. I won't say anything about your son but I will tell you.....
some angel is going to come along and help with things your son took care of. I just know that when things looks so dark, there is light again.
I wish I lived near enough to say I'll come help you on good days for me. But that's not possible.
Life can hand us a bunch of crap and it's so hard when one has their health. But when one or two in the home are ill and there's nobody to pick up some slack....I can't even image.
I just don't know waht else to say but Let Go and Let God. Pray to him for help and strength.
Take care, Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Tracy, Have you asked your son why he decided to enlist? My son hates to hear me even mention my ALS dx or talk about my health problems. It feels like he doesn't care about me at all.
Then I remember when I was a child and my dad died suddenly. I was terrified that my mom would die too and leave me all alone.
I tell myself that no child wants to hear that their mom is dying so not dealing with it is a way to protect themselves. It's better than thinking my son doesnt care about me.
I hope you can find some peace with your son's decision and let him know that you support him. Try to get better so you can welcome him home healthy.
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Oh Tracy, my heart goes out to you. I will keep you and your family in my prayers.
Posts: 5237 | From here | Registered: Nov 2007
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Tracy,
your mailbox was full.
Posts: 1834 | From US | Registered: Oct 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I'm so sorry for all you are going through. I hope things improve for you very soon.
Sending healing energy your way.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
Sorry life is hurting right now, I will be praying for you and your family.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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penguingirl
Frequent Contributor (1K+ posts)
Member # 28688
posted
I'm so sorry to hear about your devastating news, Tracy.
Sending you hugs and prayers for your family.
-------------------- Posts: 1204 | From USA | Registered: Oct 2010
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Hugs Tracy,
Will keep you both in my prayers.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
So sorry-teenage boys think differently. He might feel he needs to escape the "lyme world" and prove to himself he's "normal". They don't always make the right decisions.
I would be devastated too-I feel safer when my family is around.
Prayers
Posts: 1276 | From maryland | Registered: Jan 2009
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i won't comment on your son. i'm sorry you've been sick. just remember you have us.
wish i could come up and help out. maybe we could share hospital beds!!
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Thank you for your responses. I will write more later.
One of my lyme friends I originally met here is planning to drive from Alabama and pick up another Lyme friend in Virginia and come stay with me until it's time for her 8 year old to start school. It will probably be for about two weeks by the time they get here and have to go back, as he starts in mid August.
Thank God for our Lyme Friends. My husband is really cognitively impaired and the best way is how Ryan describes it..."he's in his own little world over there.." so I feel I'm so on my own without Ryan. In fact if it weren't for Ryan I wouldn't have gotten home from the hospital because Blake had disappeared to go help a friend until 6 pm and never even thought to call me at the hospital and check on me or anything.
Oh God my heart is aching. I know it could be so, so, so much worse...but I need to be able to get through this pain anyway.
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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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Aw dang, Tracy.
Still praying for you and Ryan and your dear husband.
The Lord will provide.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
Prayers for you ...you are an amazing woman Tracy...God's strength over you and protection !!!!
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Tracy,
if three people in a house are sick it is usually hidden mold.
Mold damages your frontal lobe, so you cannot understand the situaton and run away.
Maybe your son did feel the place was not healthy for him and he left.
When you are willing to talk about mold and possibilities pm me. My MG is just gone after the mold was gone.
Posts: 1834 | From US | Registered: Oct 2008
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
I'm sorry to hear about the bad news... praying God will give you the strength and peace to cope with the difficult road ahead.
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
I'm sorry to hear about the bad news... praying God will give you the strength and peace to cope with the difficult road ahead.
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Oh, Tracy, good grief!! Have you asked Ryan why he enlisted, as someone else suggested?
Why don't you ask him to reconsider. Tell him how you feel and how much you need him and are concerned for him. It may or may not change anything, but what do you have to lose? And at least you will let him know how you feel.
I agree with what someone else said, that it's too painful for a child/teenager to feel how sick their own mother and family is, so it's easier for them to pretend otherwise.
It's great that Lyme friends are coming to help you out.
I know that now is probably not the time you can address it, but I would heed the warning about mold, as you can.
I send you love and prayers for healing for all of you.
Posts: 3771 | From around | Registered: Mar 2008
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Tracy,
I'm so sorry to hear all you are going through. I find that when we are sick, changes in life are always more upsetting.
Dealing with a form of "empty nest" is always hard, but when you are sick too...wow...it is even more over powering.
The isolation we deal with in this situation is tough. I don't have any answers obviously, but I did want to just say that I DO understand. Hang in there, Tracy!!!
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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