Husband With Illness

2011-05-11T11:50:00.000-07:00

Wednesday, May 11, 2011

I received an e-mail this week. It was one of those "forwarded" ones, and the gist of it is: you have a choice as to whether it's going to be a happy or an unhappy day. It goes on-and-on-and-on about putting on a happy face and choosing to "have a great day" in spite of everything. You know, I do believe that we all have choices to make, and I believe that in general I am more of a "glass half full" kind of person. More often than not, I put on a happy face when I don't feel like it, answer "fine" when people ask how I am (esp. when you know they don't really care), and generally come across as laid-back. I definitely am not always "in-yer-face" about the difficult situation I live in. In fact, I'm sure a majority of the people I'm acquainted with don't even have a CLUE what I'm dealing with. This particular person does know ... to a certain extent ... and I can't help but think that s/he was sending me a message that I shouldn't feel the way I feel. And I find it extremely insensitive. Admittedly, this person has had some big issues of his/her own in the past couple of years, and if s/he chooses to "be happy" ... put on a fake smiley face ... that's his/her prerogative. Just don't try to tell ME what I'm allowed to feel.

In fact, given a choice between being around a friend who is a fake happy person or a friend who lets his/her guard down and feels safe enough to let you see the real pain and live it with them ... I would definitely, no holds barred, without a doubt, choose the real friend ... even if they are not "choosing" a happy day when they feel absolutely overwhelmed with their situation. I want to cry with them. And so, I want people around me who are willing to cry with me. And I count myself extremely blessed that I have several people like that in my life. Oops, there I go, being a happy person ... (but at least it's real!)

We Just Never Know

2011-01-18T12:21:00.001-08:00

Today, about an hour and a half ago, I was in the house for a short time. It was about 2:00 pm, and my husband Rein was beginning to get on with his day. His mornings are always rough. He wakes in indescribable pain. All I know is that I often wish that he wouldn't wake up when I do, because I hate hearing and seeing his pain. If he could only stay asleep until I leave ... and then I wouldn't have to hear the moans, the sobs. I wouldn't have to see his twisted body trying to crawl out of bed to head to the bathroom. But I know it is selfish of me to even think that way. Even if I can't do anything to help him, a comforting touch on the back or soothing word or two, has got to be better for him than to wake up to no one.

Anyway, it looked like he was starting to shake the morning pain, and looked like he was going to be able to move about some this afternoon. We even talked about him walking out to my studio and we were going to work on a small project on the computer together (I was going to type something up for him). When I left him, he was going to have yet another cup of coffee so that the caffeine would help jump start him. Well, I hadn't seen him yet, so I just went to the house to check up on him, and he is back in bed. That quickly, this beast (his illness) reared its ugly head, and he was unable to follow through on what he had planned.

So .... this is a good example of how we "JUST NEVER KNOW". We make plans, never knowing if we'll be able to follow through on them. This is one of the unpleasant changes we have had to adjust to. A whole new lifestyle.

We're thinking about a week of vacation next month. It would mean driving for 12 hours one way. Even this is not an easy decision to make. Will he be like a vegetable during the trip? Laying in the back of the van? Will I have to do all of the driving? When we get there, will he feel like doing anything -- or will he be a lump? Will he even have any fun at all -- or will he wish that he had just stayed home?

Ah.

August 2, 2010

2010-08-02T20:51:00.000-07:00

Wow, it's been 6 months since I last blogged!

It's late, so I'll just give a quick update on what's new, and will promise to try to get back here soon to post more.

Rein has been having some pretty bad mornings lately .... as always. He had one day in bed a couple of weeks ago. He's been able to accomplish some tasks around the yard lately - I'm so
thankful that he can do things, even though he is still in pain when he does them. I truly do not know how I would manage our big yard, if he were unable to ride the lawn mower. I guess I'd find the time ... on top of everything else I do ... or else hire someone, but at the rate the lawn has been growing this year, I would be filing bankruptcy by now! Ha ha!

He also has a vegetable garden again this year. We've been enjoying lettuce since April, and also have peas, green beans, cucumbers, zucchini, beets, green peppers, and now the tomatoes, jalapenos and cilantro are ready to be made into some wonderful home-made fresh salsa! Love it! It really helps the grocery bill that we're able to enjoy garden produce.

OK enough for tonight, since it's midnight and I've been working since 9am. I promise to be back here real soon for more of an update.

February 10, 2010

2010-02-10T17:03:00.000-08:00

Well, there is another drug to add to Reinhard's "cannot tolerate" list ..... ibuprofen. Yes, the "over the counter" drug that most everyone can take for a headache or body ache. What happened? Well, he had been using ibuprofen and acetaminophen together. Gradually his bladder was giving him more and more trouble, and on a fluke, he googled the drugs and sure enough, ibuprofen can cause bladder issues. For him, he was having problems being able to empty his bladder, sometimes only a bit would dribble out; also, there was increasing pain and pressure to the point where this issue was a constant discomfort.... added to the other issues he deals with on a daily basis. When he discontinued the ibuprofen, he felt relief within a couple days. No coincidence there. Who would have thought.... ibuprofen.

After my having "nagged" him (for, literally, a couple of years) about trying chiropractic, Reinhard finally went to go see a specialty chiropractor whom I had become aware of/acquainted with. His first appointment was a week ago Friday (Jan. 29), the second appointment, Monday (Feb. 1); third appointment on Friday (Feb. 5). He has been in SO much pain after these appointments, but I give him credit that he's not ready to give up on it yet in the hopes that it may actually help after a while. This is how he described the pain to me .... he feels like someone slugged him really hard mid-spine (where his 'hump' is), and the pain goes up the spine from that spot.... up to his neck, up into his head, top of head, and into his eyes. He says that when he closes his eyes, the pain is so intense that he sees stars. Wow. It's hard to imagine, isn't it?

Last night, I awoke at 3:30 a.m. because Reinhard was having spasms. He said today that he didn't know it was happening, but it was enough to wake me. His whole body tenses and jerks involuntarily. When this happens, I don't know whether to rub his body and try to relieve the spasm (and thereby probably wake him) .... or just leave it alone.

These are some of the things that make me so, so sad. It upsets me so much, but I do try to hide it. It's hard not to become down when your sweetheart is hurting all the time. I know that God is in control and that He has a plan, He sees the big picture. But sometimes those seem like empty words. Living this day-by-day it IS hard. There are so many things that we've both had to give up because of this beast. I miss the spontaneous things we used to do. Now, I either have to find a girlfriend to do things with, or do without. And if I do things with a girlfriend, there's always the guilt of leaving him behind while I go have fun. Not that he lays any guilt on me, he is extremely good to me in that regard. He's glad when I can get out.

Ah, well....gotta keep focusing on all our blessings - the glass truly IS half full!!!

January 20, 2010

2010-01-20T07:06:00.000-08:00

When I am with someone who is somewhat aware of Reinhard's health issues, the question of whether the weather affects his health seems to come up often. I can't imagine that oppressive weather with low-pressures, raining/snowing, overcast skies (especially for weeks at a time here in Southwest Lower Michigan :) ) could ever help anyone's health. But we also can't pin his especially bad days on the weather, either. Many times he is in bed all day, in severe pain and/or severe fatigue, unable to lift his head from his pillow .... and the weather is picture-perfect outside: the sun is shining, high-pressure abounds, and it's 75 degrees. The question about weather patterns controlling his symptoms is frustrating. But I smile and answer the question as best I can.... for the 10,000th time. Sometimes it's like being Bill Murray in "Groundhog Day". You know what's coming next, sometimes try to avoid it, other times just jump right in & get it over with. And try, try, try to be patient with the person asking the question. After all, I do understand that people care.

Another frustrating/upsetting thing that we've dealt with these years is people who have been very pushy about their solution to his illness. A few years ago, there were several individuals we knew who were very into this pyramid scheme "health" product called ReLiv. It got to the point where I would be in tears because of these thoughtless people who would corner me to insist that I attend one of their ReLiv rallies and buy into this scam. I didn't know how to ask for what I needed: someone to sit with me and pray with me, to wrap their arms around me and tell me it was going to be OK. His body was/is the one in pain, but both of our lives have been turned upside down. I was so unsure of so many things at that time, and I was scared. I had some huge decisions that needed to be made, and was struggling with depression and anxiety.

Some other "solutions" that have been suggested include: other supplements ("THIS one's different!" they say), coral calcium, chelation, Noni / Mangosteen / Goji juices, and more. Some might think "well, at least people care enough to tell you about xyz". Our point is that we've made 3 trips to the Mayo Clinic, he's seen just about every specialist in our area. ReLiv, etc. survives by testimonials -- not by science. If ReLiv were the answer, medical doctors would be suggesting it! If ReLiv were the answer, NO ONE would ever have health problems! Take it to the hospitals, to the nursing homes, to every oppressed area!

By the way, he did end up trying ReLiv (mainly in an attempt to stop the harassment). Then, the sales pitch turned to: he didn't take it LONG ENOUGH!

More again soon.

December 5, 2009

2009-12-05T07:26:00.000-08:00

My business is extremely demanding physically during the month of December. I'm so thankful for the business. Reinhard helps me however and whenever he is able to. There is much "please run to the suppliers and pick up a carton of packing tape" or "pick up some product at xyz". He is also able, when he's feeling decent, to help prepare shipping boxes and labels, that sort of thing.

To help me, he loads himself up with his max daily dosage of the only drugs he can tolerate .... ibuprofen and aceteminophen. And LOTS of caffeine, which concerns me. But it helps him, so sometimes "you have to do what you have to do".

The other day, he set up about 15 shipping boxes for me. That means opening the box and taping the bottom securely on the outside. When he was finished, he was literally winded. The next morning, he was in even more severe pain (than usual) from doing that. It's nuts. He used to be "Mr. Fitness" ... he was always skinny, but very strong. He would go bicycle riding for 100 miles on his day off. He loved to water-ski, knee-board, played on the church volleyball and softball teams, and occasionally played golf. Those activities are probably now forever impossible for him to do again ..... unless he gets his miracle. Which of course, we are praying for.

Need to run, I have lots of work to do!

November 7, 2009

2009-11-07T08:40:00.000-08:00

Our journey has been a difficult one. Some might ask why I call it "our" journey. When you love someone, and you're as one, you just don't separate what they're going through from yourself. It's not as if my life has just gone forward without being touched by this experience. (Hardly .... quite the opposite). It would take a pretty hard heart to look upon your spouse's pain and fatigue and neurological issues, and say "hey, buddy, that's YOUR journey".

Wow! Check this out! I was looking on google for the Bible quote about being one flesh, and this popped up: As you continue on this journey called marriage, you still matter to your spouse. When you hurt, he or she hurts. When someone attacks you, he or she is also attacked. Every tear you shed is precious to him or her. When you rejoice in life’s little victories, he or she rejoices with you. Here's the link: click here

In time, I may share here some of the insensitive, hurtful, destructive things that have been said / done to us on this journey. For now, believe me .... my heart (and his) have been torn out and stomped on in ways I never would have believed, and by people I never would have expected, before this journey began 7+ years ago.

The flip side of this, is that both of our relationships with our Lord Jesus Christ have become so much stronger. I think there's a quote or song that goes "when you find that He is all you have, you find that He is all you need".

Of course, we do have people who have stood by us without quavering. One friend in particular, Marilyn, has been a huge force for good in our lives, and I will forever be grateful to her. She's an example of someone who understands "bad stuff" because she, too, has been through "bad stuff" .... she, her sister, and her Mom cared for their Dad/husband through his 8 years of living with the progressively-worse disease ALS ("Lou Gehrig's disease"). They cared for him -- in his own home -- right up until the end, with him gradually losing the use of limbs, speech, and control of bodily functions. The 3 of them are saints for the care they gave him; not every family would do what they did.

We have been told that we/he craves "pity". No, nothing could be further from the truth. Marilyn's gift to us is affirmation. The words she gives soothes the soul. For instance, to me she'll say: "Carol, I don't know how you do it ... I admire that you are handling everything so well". To him, she might say "I know you're hurting, Rein, but you hang in there.... know that I care". Does anyone else consider that pity?

More to come.... thanks for reading.

October 7, 2009

2009-10-07T12:10:00.000-07:00

Hello, my name is Carol Brandt, and I decided to begin this blog for two reasons: 1) to help other women who are in similar situations and 2) to help raise awareness of what it is like to live with a husband who has chronic pain and health issues.

My husband, Reinhard, is 51 years old and suffers daily with chronic pain, chronic fatigue, and related health issues. His illness started 7 years ago. About a year in, after seeing several local doctors and specialists, we gathered up all of his medical information and went to Mayo Clinic. There are two ways to be seen at Mayo: to have an appointment, referred by one's doctor (which can take months); or to go there, register, and sit and wait until they have an opening. We opted for #2. We waited 3 1/2 weeks for him to be seen, but then it went quickly: a flurry of appointments with primary care, neurologists, cardiologists, and more; blood work, urinalysis, CT Scans, X-Rays, MRIs. When he left Mayo, he had a list of about 10 or 12 actual diagnoses, but the one that most people focus on is: Fibromyalgia (the "F" word). I hate this word, because it can mean so many things depending on the person. For Reinhard, it means that every single day he wakes up in unbelievable pain. Even before he speaks, you can tell he hurts very much. He moans, there are tears in his eyes and running down his cheeks, and his forehead is furrowed. He tries to be a trouper and not show it that much, but I know it, and I see it.

There is much more to say, but will continue another day.