it's been a tough summer for many!

[irish]

I just had to add my 2 cents to this forum. I have to say that I am not as ill as I was last summer, but the heat has gotten me down and many days it is all I can do just to sit in my recliner.Even with air conditioning it seems to take something out of our spirit. My heart goes out to those who don't have the luxury of air conditioning.

My infections have been a little bit less so far this year. I have had a steroid liguid added to my nasal irrigation on an every other day basis and it helps to reduce some of the swelling so that I can clear things out better. I think this helps keep them better, however, I still have the infections in my salivary glands. Never ending ordeal.

I have to add that my DH has been having quite a time also. For those of you not familiar with our story, he had lung cancer in 2009 which was a stage one and didn't require treatment other than surgical removal. He then had a stroke in June 2010. He has bad atrial fibrillation and very severe COPD and has had many hospitalization with lung infections. He also has had CEliac Sprue and a colitis that goes along with celiac disease often times.

In the fall of 2010 I decided to take him to my immunologist for an assessment as he had been having "failure to thrive" as I call it. It was a surprise to the docs when his blood work showed up with low IgG levels which is an immune deficiency. He also tested positive for a low level of Mannose binding lectin which is something that is genetic and very unpredictable. Some people have to problem with this but he does and it helps to inhibit the immune response also.

Well at my infusion the immunologist came and sat down next to me and went through DH most recent blood work. His IgG levels have dropped considerably and they are going to have to either be much more stringent with his alternating antibiotic treatment to prevent infections or he will have to have IVIG. I can't say I was surprised by this as he has not been well.

Since Feb 20 this year he started out with a 5 day hospitalzation for double pneumonia and respiratory failure which fortunately he recovered from with out intubation and without any loss of brain function. He was also in ER with elevated white count and IV antibiotics in April. He has been on 11 oral antibiotic series of 10 to 14 days and in June he had a 16 day burst and taper of prednisone. This past Sunday he started another 16 day burst and taper of prednisone.

He had gotten up at 3 AM on Sunday morning cause his breathing was "funny". He did not tell me this until about 11 AM. The best I can figure out is he was having periods of apnea of long periods of no respiration and it woke him up or he just happened to wake up. We spent time helping him blow off the extra carbon dioxide that builds up in COPDers lungs and makes them quit breathing.

He has a Living Will and health care declaration and chose a DNR or do not resusitate in Feb. He still thinks that he may want a vent if needed but when asked he says that it would be up to me to pull the plug. We have to talk more with some docs about this one!!! NOthing like playing God!!! Soooo, I just hope and pray that when the time comes it is fast and peaceful. Old age is not for sissies plus it most definitely is stressful.

He is also having some wicked backaches lately and we are wondering if his past history of back infection is brewing. He had a couple back surgeries in 2002 and ended up with Meningitis, Septicemia (blood poisoning) cellutlis and discitis which resulted in a 75 day hospital stay with IV antibiotics every 6 hours. He was lucky he recovered without being paralyzed according to his docs.

The immunologist thinks that all this infection happened because he had the immune deficiency and no one tested for it. Soooo, as I read so many threads and so many people with problems it just seems that we are having a lot of issues in many families.

WE are going through a rather traumatic time as a nation and it makes me wonder if all the stress in the world affects us all in different ways---but especially out health. Just a thought. Thanks for listening. Irish

[Meld256]

Dear Irish, 

I'm so glad you're not as ill as last summer; you had quite a time of it!  That's great you can clear the nasal passages a bit better, and hope that the Plaquenil you started has helped you, too.

The heat is brutal this year and the AC in our house stuggles to keep up many days. It really gets to me, too.  Just wears you down to no energy at all, doesn't it?  I've had to stand in a cool shower some days to try to feel better.  My hubby goes to work where it's hot, then some days goes golfing in this 90-degree weather!  And I'm worn out just trying to do a few household things. 

I've wondered about you and especially your husband's health lately.  I'm sure you're concerned for him and his IgG levels dropping.  What other treatments would they recommend?  You say IVIG might be next?

He sounds like a tough old guy who doesn't tell people everything about how he feels physically.  I am married to one of those, too. 
I hope the docs can decide why your husband is having such awful backaches, too, and get him some relief.

As a group here, it does seem we have lots of families in crisis mode. And you are always there to encourage them, support them and send your blessings.  I want you to know how much we appreciate you! 

Just as you are there for your husband and family, you are there for all of us here.  Just want you to know that you are loved and that so many of us enjoy your medical info. but especially the common sense handed along with it all.  As you say, "Accept, Adapt and Persevere"   That last one can become long and difficult sometimes! 
Just sending you some gentle cyber-hugs and blessings today.

Melinda 

[artistangie]

First big hugs and just know i will be praying for you both! 

Secondly, yes, I do believe the stress of our environment (our nation) does affect us...how could it not really?  And then there are more stresses that are upon each of us daily too.... some folks deal with the stress with alcohol or drugs and i wonder if our AI isn't a direct link to the stress we feel ...  of course, im sick that causes me to be stressed then i get sicker is a never ending circle if we dont figure a way to stop it.  now im rambling but you do have that way of making us think 

[Katybarstool]

Irish

Thank you for sharing about your beloved hubby's situaton. This must have been a very wearing time for you both. Thankfully, you are feeling reasonably well, so able to help him, which is a blessing, although you do have more problems healthwise than mose of us.

I always love to read your posts. You have such a way with words, and I always learn something from you.

You are in my thoughts and prayers.

Kathyx

[EllaBlue]

Hi, I am new here and trying to get to know others. I am SO happy to have found this site!
I am sorry for all you are going through.
I feel like a "Shut In" as I just cannot tolerate ANY of this heat any more!  It makes me sad and with Lupus too, I cannot be in the sun.....
I just wanted to drop in and say I am wishing you better more comfy days....and I am sorry for your pain..
EllaBlue

[Joe S.]

(((Irish))) distant hugs and prayers is all that I can offer you. I know that you and your DH have been through a lot. My wife is concerned that I will go before she does and I believe that you may have similar issues. Count your spoons and take care of yourself.

[sjenny]

Irish:

My heart goes out to you and your husband - wish I had some wisdom to offer that would help as much as your words have often helped me.  I am praying for you both - what is impossible for man is possible with God.

Sue

[iraisin]

Irish,

I can only pray for you and admire your strength. You are incredible, you are stong, and you are wise. Your ability to endure all of this is beyond my comprehension.

My prayers for your DH and you...many times, and for many days.

[Gayle]

Irish,

I am so glad you wrote this and allowed us a peek inside all you have going on. It is amazing you have the time or energy to help so many on here and provide such wisdom. I and I think all, thank and appreciate you so much!

Please know you and your husband are in my prayers for continued strength and a healing to allow you both to be happy.

I am sure it also feels good to write that, get it out, down on 'paper' and see just how strong you both are! It is a miracle I think. It also allows you to give it away. My brain won't let me come up with the words I want so I hope you understand what I mean.

I hope this back pain of you husbands resolves quickly. It is not kidney's, right?
Many hugs and prayers to hold you firmly!
Gayle

[sass]

Irish...

words...where are they???  after all they are only just words...


I love you Irish and do not know what more to add.....~sass~

[irish]

I am thankful for all your caring posts and want you to know that every day at our house is different. Living with the chronic illness we both have is certainly a learning experience.

Hubby is doing much better again since he started back on the prednisone. It really is a miracle drug for him. He still has the shortness of breath, but it is better. His back pain is much improved and we went to the neurologist today for his 1 year checkup. His neuro issues are all going well and he can still drive and do what he can, when he can do it.

It was our 48th wedding anniverary today and we went out to eat and then went to Sams Club and Menards. He came into Menards for a little while and picked out 3 small windows that need to be replaced in the barn. He will try to do this himself, but our son will help hiim, I know. This hubby of mine does not quit. He has always said that laying in bed will kill you. He was 74 on July 17th and he has informed me that he will live until he is 80 years old.

I told him that he was going to have to find a new woman to take care of him cause I was going to be long gone before him. He has always been an optimistic person and the stuff he has gone through would kill a lesser man, that is for sure.

Anyway, he is up for the count again. The immunologist keeps saying he is a walking miracle. There is a whole lot he can't do, and he sits in the car when I do my shopping much of the time. However, he is up and over to our son's business every morning and stays there til noon, comes home for lunch and goes back til closing time unless he needs to lie down.  The socialization and activity are what keep him going.

I almost feel like a liar, but really, folks, he does get really sick and has so many things wrong the docs just shake their heads!!!

Me, I just cook the meals and wash the clothes, order all the medications and fill all the pill boxes.  These things are full time jobs. Ain't life interesting. Today there is hope and a breath of relief---until the next time. Thanks for all your caring. Irish

[Bucky]

Happy 48th Anniversary Irish & Mr. Irish!!   

May you both be blessed with many, many more years together!

Bucky

[engy]

Irish,

happy anniversary and bless you & your hubby!

Carie

[iraisin]

Happy Anniversary, Irish!

So glad DH is back and doin' his thing!

[Scottietottie]

Happy Anniversary Irish 

I'm sorry you and your hubby are having such a tough time. Like you say - old age is not for sissies. You are both battlers though and I'm sure your partnership strengthens that resolve.

Your knowledge, wisdom and common sense contributes so much to these boards.

It's so nice to hear that despite everything you managed to celebrate your anniversary in style.

Take care - and I hope you both live till you're 80!!

Scottie  x x x