Yet, Another Interruption!!!

Well, now I have shingles. I guess I just wanted to add just one more event to this year. Sheesh... As a result, my postings will be sporatic once again. However, I do have some more light-hearted posts already scheduled.

There has been a lot of events in my life since the end of last year and I know many of you know it, but for those who don't quick summary :

October 2008 ~ mass removed, possible cancer, benign. Is lipoma

Thanksgiving/Christmas ~ family stress/with just the holidays as usual, but with triggers this time and begin to decompensate.

Jan/Feb 2009 ~ 24 day psychiatric hospitalization

March 2009 ~ not unpacked from hospitalization yet and am hospitalized 7 days for very serious pneumonia

March 2009 ~ day after I'm discharged from the hospital my father-in-law is diagnosed with terminal lung cancer, hospice in place, given one week to six months.

April 2009 ~ father-in-law not doing well has hospice nurse in home. He passes away on 4/26/09
Funeral Service ~ May 1st
Burial Service ~ May 9th

May 10, 2009 ~ a forty two day psychiatric hospitalization; part of lung collapsed.

July 2009 ~ bronchitis

July 2009 ~ still recovering from pneumonia

August 2009 ~ still having shortness of breath, fatigue and shallow breathing. Testing begins to evaluate immune system.

September 2009 ~ send one of "those" letters to my mother. Family gets turned upside down and lots of chaos and hurtful responses and family closet opens.

October 2009 ~ begin infusion treatment for low antibody. One time per month for a year. Infusion therapy: Via IV, antibody that is low is added to blood stream...Ouch. For me, it takes about 5 hours!!!

November 2009 ~ Aunt had back problems and surgery expected at beginning of December (Aunt is like a mother as she basically raised me). Grandmother showing cognitive problems. Decide not to attend any holidays with family...good decision, but emotional fall out.

December 2009 ~ Shingles and family drama continues. I am so tired and frustrated with this year and continue to pray for boring!! Hoping next year will be boring.

Other things: Vision changes, skin problems all over, and 60 pound weight gain due to medications for pneumonia, urinary tract infection, continue therapy at four times per week, and more!!! Despite all of this my faith in God remains strong although I wonder, if He knows what boring is. Feeling a little like Job in the Bible. Yet, I still love the Lord and know that he is with me.

Time for Another Health Update!!

Taking time out from my family drama for a health update. I remain on breathing treatments four times per day, continue to become short of breath, and have lots of fatigue and respiratory difficulties. My skin conditions have all come back. Some it may be due to stress. It isn't like I haven't had any stress...hmm, letter and response to my mother, therapy, health stress, trying to locate the N1H1 and influenza vaccinations, and the beat goes on!!

I had an eye examination early due to the corticosteroids. Apparently, they changed my vision for the worse by 40% and they are like I aged 10 years. He indicated it is rare that changes go back to baseline. Sigh!! But, I had an annual exam on October 30th and they were much better. Praise God!!!

On October 21st, I began infusion therapy via IV to "add" that antibody to my blood. First off, I was very nervous, but my husband took the day off to be with me...he is so sweet. They gave me a substitute for what my doctor ordered...kind of like a generic. I was supposed to receive Gamunex. Anyway, I got dizzy, lightheaded, a headache and a little nausea. The fluid going in was painful and cold, so the very nice nurse put a heating pad around my arm and slowed the rate of flow. Then, I began to get itchy, so after not hearing from my doctor after paging him, therapy was discontinued. This was really a pain because the process has been messed up and delayed several times.

I saw my doctor who said that what they gave me has sorbital in it which may be the reason for my symptoms and which is why he always requests the Gamunex the more expensive one. Since I only receive half of the medication, I was scheduled again in two weeks (11.03.09) which went without too many problems. I did find out that my body cannot take higher rates so the flow will be slowed which will mean it will take longer...probably more that four hours with me on 50mg of Benadryl just in case...no worries, my husband will be driving and there with me.

I bring a book, a couple of magazines, my journal, oh and we bring a lunch. It has been prescribed for me one time per month for a year. My husband will be with me every time. Oh, the second time, I brought my own blanket. Also, I am to stay away from people who are sick, children, crowds, etc...I need to extra cautious as if I catch anything, it will likely end me up in the hospital. So, my world consists of the Internet, therapy four times per week, psychiatrist every other week, Nordstrom when not busy and various other doctor appointments.

Professional Patient,
CC

The "ists" in My Life!!

How am I doing? I'm having difficulty adjusting to being back home still and going to way to many doctors. I just wonder how many "ist"s there are. I see a therapist, psychatrist, dematologist, pulmonologist, dentist, optometrist, allergist and my primary care physician-ist!! I'm having difficulty with recovering from my bronchitis...with what I know now it may be 2012 before I am well...just kidding, but it is going to be at least a few months. My lungs are officially celebrities now with the amount of xrays that have been taken of them.

I was supposed to stop seeing my pulmonologist after the pneumonia, but got bronchitis. I am now having breathing treatments four times per day via nebulizer, have an inhaler, pain medication, have gone through a short pack for steriods & antibiotic...this is all from my pulmonologist. He is now considering if my allergies have anything to do with my slow recovery. So, off I go to my allergist which is good because I had one scheduled. I had to cancel two scheduled appointments because I've been "playing" this year. My allergist explains what is going on with my lungs and allergies. Decides to send me to take blood and schedule a new allergy scratch test panel and injection test. Test scheduled for mid August. Ouch! Sigh!!

I'm referred to a dermatologist by my PCP~ist for some nail and skin abnormalities. Dermatologist says, that most are due to the high temperatures from my pneumonia!! I thought that I was past that!! And, one spot is because of age and to expect more...AGE!!!! Creams and ointments are not working fast enough or doing anything visible, at all, so now I have to have two steriod injections this week...whose hand do I get to crush...any voluteers?

Now, I already saw my optometrist to check for catarats and glaucoma from the steriods for my pneumonia. Now, after my injections and broncitis medications, he wants to see me again!! I can't schedule my dentist appointment due for almost a year due to steriods or my health being too fragile!! Never thought that I would want to go to the dentist. Sheesh...on hold again.

It feels good to be back with my psychiatrist and the meds are good, but seeing him is a whole different story. I've been to tired to go on the days that I have scheduled, so I've only seen him once and two telephone sessions. I have been to most of my therapist's sessions or had telephone sessions at four times a week.

I know that there are a lot more special~ists, so I am grateful that it is only a handful. I am also thankful that all of my physicians are good. However, I think that I am a full time patient. And, then I have to have follow up appointments with my primary care physician...what does she want to know anyway...just kidding?

To top it off, I have laryngitis!!! (did you see how "ist" is very similar to "tis" as in bronchitis and laryngitis...it is a conspiracy...I'm not paranoid) Then, because my brain is still recovering, I forget to put the "ist" that I was sheduleded to see in my date book. I just wrote a time and then, couldn't remember who I was supposed to see. After calling three offices, I finally figured out who I was to see. I better check tomorrow's calendar to see which "ist" I'm scheduled for. :)

Okay now yesterday (Monday) I called my allergist because I was having more difficulty over the weekend with SOB, wheezing and just generally not feeling well. Well, they tried to do a pulmonary function test and said that I didn't have enough output for the computer to register it, so they couldn't go any further. However, I did get a steroid shot in both hips...ouch and an oral steriod...did I forget to tell you that corticosteriod (that is what I refer to as steriods) cause weight gain. I gained 50 pounds since January...sheesh!!! Anyway, I then went to get my blood drawn. My pulmonologist and allergist spoke with one another. You would think that there would be nothing else to do since I already had left over oral medication. Well, I then had to call my dermatologist to see if I should still have the injections scheduled for tomorrow.

Can I have a social worker to help me keep things straight, explain several times what I'm taking what for and what is going on and remember for me...I've even forgot a therapy appointment. I also now know, I don't have swiss cheese brain...my breathing is just too shallow to get enough blood to my brain.

Good, now I actually have a reason for my brain and being clumsy...now how do I expain the other times? For more rambling thoughts click on this link, http://clinicallyclueless.blogspot.com/2009/07/lessons-and-perspective-from-patient.html to read more rambling thoughts and lessons learned during my hospitalizations.

Coleen
(Professional Patient)