our Iowa City visit

[KathyC]

The good news is that Mike does not have muscular dystrophy but the bad news of course is that we don't know what is happening to his body. Today he cannot get the lid off of a vacuum sealed jar or unscrew the cap off of a new gal jug of milk but 10yrs ago, as a body builder, he could bench press 400 lbs! His physical strength is gone. He used to have nice straight legs but now it looks like he has been riding a bull for 30 yrs. Our 4 yr old GS says papa walks like a penquin & he is right. He has had difficulty walking for some time now but about 6 mo ago had to start using a cane in order to keep his balance & of course we have our Travelscoot that Nieciez told us about. This all started over 6 yrs ago while he was still a policeman but of course has gotten much worse these past few yrs. He lives in constant pain that changes from a spine that feels like it is on fire to terrible gripping pains that wrap around his body & sometimes the body almost gets "locked" up til he can barely move (kind of walks like Frankenstein). The neurologist is done with us & sending a report to orthopedics.

Mike said on the drive home that he is done with trying to find out what is happening. No more tests & I understand his feelings. Whatever this is, the damage is done & nothing is going to fix it.

With all of this complaining, we still have a lot to be thankful for. He doesn't have cancer in the spine & he doesn't have MD. A trip to a big hospital always allows you to look around & see others who are in worse shape & then when you see the kids--well, nothing worse than seeing a sick child. And we have each other. We can still get out to dinner, we can go to a movie, we can just sit & watch TV together. Not the retirement we dreamed of but we've still got each other.

Thanks to all for your kind wishes.

 

[popcorn]

What a day! You two have been through the wringer & still are. How has his Chrone's behaved through all of this upheavel?

I admire your ability to sound so cheerful with all this going on. One step at a time!

Liz

 

[Krazy Kruizers]

kathy

at least you are starting to cancel out some of the worst problems -- no cancer -- no MD -- but do agree it is hard going through all those tests to determine what is happening

hope the orthopedics can figure out something

prayers for you both

 

[Corky]

Kathy - I feel so sorry for Mike, you and your family. The poor guy has had every test imaginable. I forget, has he been to a Mayo Clinic?

The reason I ask is, in 2007 my FIL was at the point of not being able to move, walk, and could barely eat, he was almost down to drinking liquids for his food. The doctors here, all kinds of doctors, could not figure out what was wrong with him...his brother flew him to the Mayo Clinic down in Jacksonville, FL and they found out it was Wegener's granulomatosis - which is very rare. While he is not 100%, he can now do most things in life again.

I am thankful for your philosophy of how you will live your life together from here on out. (((HUGS)))

 

[KathyC]

Corky we have not been to Mayo which is where our daughter wants us to go & has for a long time now; she has said for sometime that she thinks he has something very rare that they just haven't hit on yet. Right now he is just tired of all the drs & all the tests & I understand it. The hard part for me is watching him struggle to walk--some days are worse than others--and of course the pain but he has meds that help & he never misses his therapy sessions. Right now our goal is to keep the lymphoma in check which we should find out next week.

 

[reggae]

Kathy, sure wish they could figure all of this out....you've been going through this for so long, with not many answers...

Prayers continue for your husband, you, and all of your family...

 

[jk]

Kathy glad that they ruled out some of the bad stuff but so sorry that they still can't figure out what is going on. It has to be terribly frustrating and I do not blame Mike one bit on putting any more tests on hold. There are a lot of things that people have that the Dr's have no idea what is going on. I was told at one time that they may figure out what is going on with my body after i am gone....with all the medical miracles out there now you would think that they could figure this out.

 

[Whimsy]

Kathy, I can understand Mike being tired of all the testing and no answers. I am glad it is not MD but sorry you are left again without a diagnosis. I hope someway you both get answers soon. I like your attitude as well on handling this. You have each other and that is a Blessing in itself.

 

[Karry]

Kathy, Blessings to you and Mike. I wish the drs. could find SOMETHING to help him, but truly admire your attitude and dedication to each other.

 

[nieciez]

Kathy, My heart just aches for what Mike and you have had to go through. It is wonderful news that it isn't MS but I know it must be awfully frustrating to not have answers...and I surely understand Mike being tired of all the test. Just know that he and you are in my thoughts and prayers and wish that someday soon he could get some answers.

 

[Mgram]

Kathy, Mike is definitely a case for the medical books......if only they had the answers. No cancer and no MD is good news. I'm so sorry that your lives have been impacted so badly, but I admire the attitude with which you both go forward.

 

[Corky]

Kathy - I can understand Mike not wanting more tests, but, my FIL called the Mayo Clinic and told them everything that had been happening, and the next thing we knew, he was on the plane. Within 3 DAYS, they had run him through every kind of testing they do, and had the diagnosis. Then they contacted certain doctors up here to take care of him. By the time he got to them, he could no longer walk. He was wheel chair bound.

No doctor here could figure it out. And, the worst part, his Internal Med doctor is (was) a close-close friend...and all he kept telling him is that he was supposed to feel like that because he was old. Well, that is wrong, no one should have to go undiagnosed.

Whatever your decision, you both remain in our thoughts and prayers.

 

[Karry]

Kathy, I just have to chime in here...without going into any detail, I am "living proof" NEVER to give up. BUT....I can understand Mike (and YOU) have had enough...maybe give it some time and then try the Mayo Clinic...you are both in my thoughts and I am so glad you have the courage to smile thru all the horrors you have lived thru. I am sure your children and granchildren are very proud of you both.

 

[korinalacount]

Girl you and your husband have got to decide whats right for you,your love will get you thru the worst of it,if he wants to rest on the doctors for a bit more power to him,the body needs some resting time as well,sometimes the quality of life needs to be thought about,in no way am I telling you 2 to give up,just take a break,and go at your own pace,Mike has suffered so much,my heart goes out to him and you,if I could have 1 day more of caring for John or just going to a movie or dinner Id jump at it,treasure some time together not just at doctors but with each other,I love you my friend so much,tell Mike hi and love to him too! Korina

 

[Beryl]

Kathy..I have no words of wisdom for you nor can I offer advice. I can only tell you that you and Mike remain in my thoughts and prayers. Hugs!

 

[bostongal]

Kathy - I am so sorry that you were not able to get a firm diagnosis on this trip but relieved that Mike does not have cancer or MD. I completely understand his feelings about no more testing as it gets really tiring on the body & soul - especially when you get no answers from it. I recently turned down an MRI that a Dr insisted on because there was no real reason other than his curiosity to do it - sometimes you have to tell the Drs no.

I send you my thoughts and prayers - if you need to vent or share I am always here for you.

Meg

 

[Jeanie]

You and Mike are in our thoughts, take care

 

[H2O babe]

I'm sure that the road you've traveled has been difficult and challenging for both of you, Kathy. Living here in MN all my life it seems as though many of us turn to Mayo when our local doctors and specialists can offer us nothing more. Sometimes it's the answer and things are uncovered and sometimes it's not. You and Mike and your family can decide together what your next steps will be. May you enjoy more days together.

Kay

 

[Corky]

Kathy - just a thought, but has Mike been checked for MS? The reason I ask is, my friend, Pic, was just over and she was telling me about a 35 yr old that she knows that has just been diagnosed at Vanderbilt with MS and that this young lady has lesions on her brain. Could the lesions on Mikes spine be caused by MS?

(((HUGS)))

 

[Cruise cutie]

My healing thoughts and prayers will always be with you.ALWAYS!!
.hugs and may it be that it is revealed for a diagnosis, but love each other to the fullest at the same time...take care..Joanne